Braithwaite Noticed the Lack of Black Female MS Representation

She faced a void of information. “The lack of representation is a big deal,” she told Black Health Matters. Multiple sclerosis (MS) patient outreach efforts did not reach her 25-year-old corner of the internet. A 2022 study from the Journal of Neurology found that MS. disproportionately impacted Black women. You wouldn’t know it by what Reese Brathwaite found on the internet in 2012.

The faces of the patients she saw sharing information did not mirror her own. Searches for multiple sclerosis symptoms rarely churned out baddies with straight-back cornrows.

“When you don’t see yourself, which is a big part of my origin story, but [when] you don’t see yourself in a health condition, especially one that you have to live with for the rest of your life, that really changes the trajectory of how you care for yourself,” she said.

From Patient Advocate for Nonprofit Leader

She founded We Are Ill, a community-focused patient advocacy organization, in 2020. The seeds were planted in 2017, with the hashtag #WeAreIllmatic, putting a new spin on the face of illness.

Being a voice for others struggling was not something the Howard University graduate planned on. “I started off as simply a patient advocate telling my personal story, so I had no idea I would start a nonprofit,” she said.

We Are Ill helps to bring the community together. They host an annual Wellness Weekend that brings community members together.

They are expanding their efforts to offer insights on lupus and neuromyelitis optica spectrum disorder, two other conditions that disproportionately affect Black women. “We’re always trying to make sure that patient care is patient-centered,” said Reese Brathwaite.

Why Creating Community is Essential

People form friendships with those who understand they may need to cancel a dinner due to fatigue and are unfazed by sudden spasms. “Providing social connectedness by community and fellowship that has proven to lead to better health outcomes,” she said. “Underrepresentation can impact healthcare access and hence result in poorer health outcomes in these populations,” according to the International Journal for Equity in Health.

How We Are Ill Provides Support

Patient advocacy organizations can serve as connective tissue between the public and the services developed by healthcare firms. Reese Brathwaite noted that resources can be difficult for patients to access if they cannot be found.

She noted that global corporations may not be as adept at communicating with those who need their support as they believe. “You have all these different departments, and so whoever is working in patient advocacy might not be working in marketing,” she said.

“We’re also dealing with patients who are dealing with their own lives and children, work, careers, spouses, and health conditions. And so, it is a lot to ask patients to go and find and seek out another thing,” she added.

They focus on showing up in the paths of those who need to learn. “We find them where they are.”

They Are Not a ‘Debbie Downer’ Community

Speakers at We Are Ill are briefed before engaging with the audience. The instructions are clear. Leave your pessimism at home. “We are not a ‘Debbie Downer’ community,” said Reese Brathwaite. “We get enough of that.” We Are Ill brings familiarity and glamour to learning about chronic illness. They include happy hours, spirited workout plans, and other activities that attendees might not expect at a healthcare conference. Attendees mill around in customized pilates socks and little black cocktail dresses. Speakers include Ashley Blaine Featherson and Jennifer Holliday.

“We are redefining what sick looks like,” she declared.

They promote living full lives by developing programming that focuses on what is possible, not what isn’t. “We had a session about intimacy and how we can help with intimacy issues, because that’s a big issue in our community,” she said.

Challenging Stereotypes About Black Women and Chronic Illness

Part of what We Are Ill does is challenge the stereotypes existing about Black women dealing with chronic illness. “When we talk about underrepresented and underserved communities, there’s an archetype that comes with it, and that is that everyone is low income, underinsured, uneducated,” she said. “We are actively dispelling that by making sure we’re tapping into our community and showing the representation accurately.”

Assuming that chronically ill Black women can only be located in particular places ensures that some of them will miss out on messages they need to hear to improve their lives.

“These community members are savvy, educated, well-informed,” she added. “They know their stuff. They just don’t trust the healthcare system.”

Stereotypes can work both ways. Medical mistrust due to medical gaslighting can cause Black women to put off seeking therapies that might improve their day-to-day pain. “When we’re not proactive about it, and we let it linger. We normalize it so much so that it is a part of our lifestyle, and it doesn’t have to be,” said Reese Brathwaite. “Proactivity saves lives.”

Being Black women, Reese Brathwaite and her growing team are uniquely positioned to address apprehensive patients. She knows they are speaking to her 25-year-old self in her work.

“We already understand some of the barriers that just exist naturally.”

Resources

Journal of Neurology

World Health Organization

CDC: Social Connection

International Journal for Equity in Health

The post Victoria Reese Brathwaite Is Reshaping Ideas About Chronic Illnesses appeared first on Black Health Matters.

Despite these realities, Black patients are underrepresented in clinical research for systemic sclerosis. Lack of representation often leads to a gap in information and what researchers understand about how new treatments work in various groups.

The DAISY trial is studying an investigational medicine in patients with systemic sclerosis. Eligible patients must be at least 18 years of age, have been diagnosed with systemic sclerosis in the last six years, and are either not taking medication for it or receiving stable doses of certain medications. Click here to learn more about this research study.

Participating in DAISY is optional. You can change your mind and opt out at any time.

Systemic Sclerosis in the Black Community

Systemic sclerosis may be rare, but its impact is felt deeply in Black communities. Studies show that Black patients are:

• More likely to be diagnosed at a younger age
• More likely to experience severe disease
• At higher risk of lung involvement, which can make breathing difficult
• Less likely to receive timely diagnosis and treatment

These disparities don’t just happen by chance. They are rooted in a variety of barriers to care, delayed diagnoses, and a lack of representation in research. Clinical trials promote quality care for those who qualify, regardless of their background.

What the DAISY Trial Is About

Clinical trials are part of the research process that explores experimental treatments and determines if they are safe and effective. There are specific criteria that the trial clinical team will review with you to see if DAISY is the right fit.

If you qualify and choose to take part, you won’t be left to navigate the journey alone. You’ll be supported by a team of medical staff who will answer your questions, monitor your health, and guide you step by step.

The results from this clinical trial could help people living with systemic sclerosis in the future.

Building Trust

It’s natural to have questions or doubts about clinical trials. There are built-in safety measures to ensure the clinical trial process is safe for those eligible to participate. Today’s trials have strict safety standards designed to protect participants.

Clinical trials are not just about science. Your experiences matter. Your participation helps researchers understand, and you contribute to closing the knowledge gap. You also help ensure that treatments are developed with the insight needed to make certain Black patients are represented in the data.

Take the Next Step

Living with systemic sclerosis can feel isolating, but you are not alone. Others are walking this path with you. Participation is always your choice.

If you or someone you love has been recently diagnosed with systemic sclerosis, the DAISY clinical trial may be an opportunity worth exploring. Click here to learn more, take the screener, and find out if the DAISY trial is right for you.

Content sponsored by AstraZeneca.

References:

• National Scleroderma Foundation
• American College of Rheumatology
• National Scleroderma Foundation

The post Black Representation in Systemic Sclerosis Research appeared first on Black Health Matters.

For Black patients, research shows that lupus is more common, more severe, and diagnosed at younger ages compared to other groups. Additionally, Black patients are at greater risk for worse outcomes when lupus attacks the kidneys.

IRIS is a clinical trial evaluating an investigational drug in patients living with lupus nephritis. You may be eligible to participate if you are at least 18 years of age, have been diagnosed with lupus nephritis, and are taking medication to treat it.

Clinical trial participation offers a pathway for those eligible to access a potential new treatment while receiving regular check-ups and assistance in managing their condition. Click here to learn more about a new clinical trial for people with lupus nephritis. Remember that taking part in a clinical trial is always voluntary, and you can opt out at any time.

Why Representation Matters in Research

When it comes to lupus nephritis, representation in clinical trials has been limited. Historically, Black patients have been underrepresented in research despite being disproportionately affected by the disease. This lack of representation creates a significant health gap.

By participating in clinical trials like IRIS, Black patients help researchers better understand how the study medications may affect those who take them. Every participant adds valuable information. Your voice, your experience, and your journey truly matter in shaping the future of lupus care.

Understanding the IRIS Trial

The IRIS clinical trial is studying an investigational treatment for lupus nephritis. The goal is to determine how this treatment affects individuals living with lupus nephritis.

If you qualify and choose to join the study, you’ll be cared for by a dedicated medical team throughout the entire study. Your health and safety will always be our top priority. The doctors and staff will explain the process, answer your questions, and guide you at every step.

Taking part in a clinical trial is always voluntary. If you decide to join IRIS, you’ll not only have the potential to benefit personally but also contribute collectively to the advancement of lupus care.

Trust the Process

It’s no secret that many in the Black community carry deep concerns about clinical research. Today, clinical trials are governed by strict safety rules, and protecting participants is the top priority.

Additionally, the IRIS study team understands that lupus nephritis does not affect everyone equally. By working with patients from different backgrounds, they are committed to making sure the research reflects the real-world experiences of Black communities.

When you participate, you are supported and cared for by a dedicated team throughout the process.

Consider Clinical Trials

Choosing to take part in research is a powerful step. For you, it may mean access to new treatments and closer monitoring of your condition. For the community, it means helping ensure that future lupus nephritis therapies are designed with Black patients in mind.

If you or someone you love is living with lupus nephritis, now is the time to learn more about IRIS. To learn more about the IRIS study and see if you may qualify, click here to take the screener questionnaire.

Content sponsored by AstraZeneca

References:

• NIDDK Lupus Nephritis
• Lupus Foundation of America. What is lupus nephritis?

The post Why Clinical Trials Matter for Black Patients Living with Lupus Nephritis appeared first on Black Health Matters.

What is FSGS?

A healthy kidney oversees filtering the blood in your body to remove and flush waste like proteins, toxins, excess water, and more. Focal segmental glomerulosclerosis, or FSGS, is a condition where parts of the kidney that filter waste are damaged or scarred. Because of this damage, some of the waste that your kidneys should be filtering leaks out into urine.

Dr. Crenshaw, a board-certified nephrologist in Thomasville, GA, brilliantly uses the analogy of rice in a strainer. “Imagine your kidneys act as the strainer holding in rice, which represents the essential substances your body needs,” he says.

“The more damaged your ‘strainer’ is, the easier it is for ‘grains of rice’ (essential substances) to pass through and enter the urine. Accumulation of vital substances in your urine can cause health complications, especially over time.

What are the Symptoms of FSGS?

• Swelling could be in the legs, ankles, and even around the eyes.
• Weight gain is due to fluid buildup
• Foamy urine from protein buildup, called proteinuria

When should I see a doctor?

Note: If you are experiencing any of the symptoms listed above, please get in touch with your HCP as soon as possible.

Are There Different Types of FSGS?

According to the Mayo Clinic, there are four types of FSGS.

• Primary FSGS. Many people diagnosed with FSGS have no known cause for their condition. The condition is called primary (idiopathic) FSGS.
• Secondary FSGS. It may occur because of another disease, such as diabetes or sickle cell, drug toxicity, obesity, or other kidney diseases. But controlling the underlying cause may slow the progression.
• Genetic FSGS, a type of kidney disease caused by mutations in genes that play a role in the structure and function of the glomeruli, the tiny filters in the kidneys.
• Unknown FSGS. Despite Clinical evaluation, the underlying cause has not been identified.

Questions to ask:

If I have diabetes or sickle cell disease, could I be at risk for FSGS?

Does my lupus put me at risk for FSGS?

What tests should I have annually?

One of my family members has FSGS. Does that mean I may have it too?

How early do I need to test my children?

What Kind of Health Complications Can Occur from FSGS?

• Nephrotic Syndrome is a condition that causes you to release an excessive amount of protein in the urine (pee). Nephrotic syndrome usually results from a problem with your kidneys’ filters (glomeruli). Glomeruli (glo-mare-yoo-lye) are tiny blood vessels in your kidneys. If you have nephrotic syndrome, losing different proteins may cause various problems. Some proteins help prevent blood clots. When you lose those proteins in your pee, blood clots can form.
• End-stage kidney Disease means your kidneys can no longer filter waste from your blood. It is often the final stage of CKD, but it can also develop suddenly or happen as a result of injury. Dialysis and transplant are the options then.

If You Don’t Have Symptoms: Be Proactive

Dr. Crenshaw encourages patients to be proactive and ask the right questions to understand their kidney health better.

Can you run the following test?

• Complete blood work
• Glomerular Filtration Rate (GFR)
• Creatinine
• Urine test to measure the amount of blood and protein in proteinuria

Once you have the tests, it is critical to keep track of your results. Then ask the following?

What are the results of my tests? What do they mean?

When should I come back for follow-up testing?

Dr. Crenshaw gives a complete breakdown of the CKD stages here. All this information will help you understand how well your kidneys are functioning currently and whether you are at higher risk for chronic kidney disease in the future.

Review Your Current Medications

Suppose you are someone who has high blood pressure, diabetes, and other comorbidities such as Hep B, Hep C, HIV, syphilis, or has been exposed to certain infections (including COVID-19). In that case, it’s essential to know that you may be predisposed to lower kidney function.

Will any of the medications I am currently taking hurt my FSGS diagnosis? Or my kidneys (if you are being proactive)?

Are there OTC medications I should avoid?

What about supplements? Are they safe to take?

Should I Consider Genetic Testing?

Dr. Crenshaw encourages everyone with African ancestry to request testing to check for any genetic disposition. There are several genetic variants related to kidney disease. One that explicitly impacts those in our community is called an APOL-1 variant, which could directly affect the progression of FSGS, heart disease, and other conditions. It has been described as an accelerator that causes your disease to progress at a faster rate.

Ask your nephrologist:

What are the benefits of genetic testing?

Do I need a referral for genetic counseling?

Does my insurance cover this?

Are there other things I need to know about genetic testing, including any possible disclosures to life insurance companies?

How do I Find a Good Nephrologist?

Your doctor may not automatically refer you to a nephrologist.  However, you can begin researching on your own, especially if your plan doesn’t require a referral. Read reviews before you decide. Tap into kidney organizations, connect with their patient and support networks for ideas as well. Check out our Nephrologist guide too.

FSGS can become a serious condition, so regularly monitoring your kidney function is essential for managing kidney health. Dr. Crenshaw shared that about 90% of people in the United States have kidney disease and are unaware of it. A statistic that is sure to wake us up about our kidney health: asking the right questions is key to understanding FSGS and its possible effects. It is not only a great way to get ahead of your kidney health, but also to encourage others to do the same.

Additional Reporting by Christine Jean-Louis

Resources

American Kidney Fund: FSGS

Mayo Clinic

National Kidney Foundation: Genetic Variants and Kidney Disease

The post FSGS: The Essential Questions to Ask Your Doctor appeared first on Black Health Matters.

Dr. Crenshaw, a nephrologist who practices in Thomasville, GA,  presented at NephCure’s 2025 Health Equity Conference and reminded us of the sobering statistics within our community: Black Americans account for 32% of kidney disease in the United States and are four times more likely to develop kidney disease than white Americans. Hypertension and diabetes comprise the majority of CKD cases in our community, but other conditions such as lupus nephritis can also result in CKD.

But there are also genetic causes, Dr Crenschaw continued. “And now we appreciate APOL-1 mediated kidney disease, particularly people of African descent.”

He broke down the stages of CKD and the levels at which the kidneys function as follows:

Stage 1: 90% or higher

Stage 2: 60-89 % mild kidney disease

Stage 3a: 59-45 Stage 3b:44%-30%

Stage 4: 29% to 15% severe kidney dysfunction

Stage 5: Less than 15% end-stage kidney disease

“Unfortunately, when I see a patient, perhaps 70% of the time, I see a patient in my office, by the time they see me, they are already at stage four chronic kidney disease,” Dr. Crenshaw said. “In other words, that functions of 29% or less, and people of color that comprises about 90% of those individuals, highlighting this level of CKD diagnostic inequity.”

“Lastly, stage five kidney disease is known as end-stage kidney Disease,” Dr. Crenshaw said. “These are individuals that have function less than 15% and also, these are individuals that qualify for the need of what we call kidney replacement therapy. In other words, this is when the individuals need dialysis.”

Dr. Crenshaw points out that we rarely talk about the psychological toll on patients with kidney disease. He pointed to a study of 1,000 patients where 67% experienced symptoms of depression. 36% could not take care of themselves due to mental health problems. An additional 27% contemplated self-harm or suicide. There were 68% that were not offered mental health support, and 53% admitted to finding it hard to speak up about their mental health.

Dr. Crenshaw pointed out, “We’re going to see a significant amount of psychological and psychiatric detriment as a result of these individuals because they have underlying kidney disease and, unfortunately, were not diagnosed at an appropriate time.”

What are the Symptoms of Kidney Failure?

Dr. Crenshaw highlighted some of the warning signs of kidney failure:

• severe fatigue
• nausea and vomiting
• swelling
• a loss of appetite
• itching

Dr. Crenshaw points out that because we are underdiagnosed for CKD in our community, or diagnosed later. Many people have CKD and do not know it.

“In the southeastern part of the United States, there is a high death rate that is affiliated with kidney disease,” Dr. Crenshaw reminds us. “As I just said, 10,000 extra people in Georgia. If there was a bridge in the gap of CKD equity, in other words, the diagnostic inequity, that gap could be bridged. We will see here that we can mitigate even the death rate of kidney disease in this country.”

It is not just the underserved that go undiagnosed. Dr. Crenshaw notes, “I gave a talk to a church about five days ago, a very educated population, and in that population, there were 70% of those individuals, perhaps that were under diagnosed with chronic kidney disease.”

The APOL-1 Connection

“People who identify as Black, African American, African, Afro Carribbean, Hispanic or Latino, have an increased chance of certain genetic forms of kidney disease. Everyone with a gene in their DNA is called APOL-1. Many people from Western or Central African ancestry carry either one of two specific genetic changes or risk alleles in the APOL-1 gene. These APOL-1 risk alleles originated 1000s ago from people from Sub Saharan Africa,” Dr Crenshaw explained.

“If a person’s DNA has these two AOL-1 risk alleles, they have a one in five chance of developing a kidney disease. Doctors call this genetic form of kidney disease, APOL-1  mediated kidney disease,” he continued. “APOL-1 mediated kidney disease can manifest in different ways in different people. Sometimes, it shows up as chronic kidney disease that is misattributed to hypertension. Other times, the disease can cause rapid progression of high levels of protein and urine and is referred to as FSGS (Focal Segmental Glomerulosclerosis).”

Dr. Crenshaw said that it is estimated that about half of Black Americans have at least one APOL-1 risk allele and that 1 in 10 of us are at risk for kidney disease because we have two copies. However, the only way to find out is through genetic testing.

For more resources on APOL-1, check out the resources at NephCures.

The post What We Need to Know About CKD appeared first on Black Health Matters.

“Nearly 80% of patients, most of whom were Black women, screened positive for at least one social risk factor,” Dr. Lim said.

This includes financial strain (up to 72%), food insecurity (51%), and housing and utilities issues (35%). These aren’t just numbers; they represent real barriers to accessing care and better health outcomes.

BHM: Can you start by summarizing the key findings of your study, particularly highlighting specific data that applies to the Black community?

Dr. Lim: Nearly 80% of patients, mostly Black women, screened positive for at least one social risk factor. Common challenges included financial strain (up to 72%), food insecurity (up to 51%), and housing and utilities (up to 35%). Importantly, 91% of patients expressed comfort in discussing social risk factors, highlighting the value of integrating SDoH screenings into routine care.

BHM: Can you explain what social determinants of health (SDoH) are and why they are important when considering the health outcomes of the Black community?

Dr. Lim: Social determinants of health refer to the conditions in which individuals are born, grow, live, work, and age. These factors, including income, education, housing, healthcare access, and experiences of discrimination, account for 30-55% of health outcomes. In the Black community, adverse SDoH, like poverty and housing instability, are associated with increased disease activity and poorer health outcomes. Systemic racism and discrimination further worsen these effects by increasing stress and reducing access to resources.

BHM: How does SDoH specifically affect Black patients with SLE, and what did your study reveal about these impacts?

Dr. Lim: Black people with SLE face adverse SDoH, like poverty, food insecurity, and inadequate housing, increasing the severity of SLE and associated comorbidities.

Discrimination is highly correlated with increased lupus disease activity and organ damage in Black women.

Despite these challenges, patients were willing to engage with healthcare providers to address these barriers. This underscores the need for systemic changes to address the impact of SDoH on Black people with SLE.

BHM: How important is trust and cultural competency in conducting these screenings within the Black community?

Dr. Lim: Trust and cultural competency are crucial. Nearly all patients were comfortable answering these questions and valued discussing their social needs. Building trust involves acknowledging historical and ongoing healthcare inequities and engaging in culturally competent care.

When patients perceive their healthcare providers as empathetic and nonjudgmental, they are more likely to share sensitive information, essential for addressing SDoH effectively.

BHM: How do barriers like transportation, financial constraints, and limited healthcare resources affect Black patients with SLE, and what strategies can help address these issues?

Dr. Lim: Barriers like transportation difficulties, financial constraints, and limited healthcare resources often lead to missed appointments, delayed diagnoses, and interruptions in treatment. To address these barriers, community-based initiatives and systemic changes are needed. Mobile clinics, telehealth services, and financial assistance programs can help. Healthcare navigation support and cultural competence among providers are also crucial. Addressing these barriers requires a collaborative approach that combines systemic healthcare reform, community-based solutions, and patient-centered support.

BHM: The study emphasized the importance of institutional leadership in addressing health inequities. Why is it crucial for healthcare institutions to prioritize SDoH, especially for marginalized communities?

Dr. Lim: Healthcare institutions have the unique capacity to identify, address, and mitigate the structural and social barriers that impact patient outcomes. By prioritizing SDoH, institutions can improve individual health outcomes and foster equity within the broader community. Institutional leadership sets the tone for cultural competency and trust-building, helping to rebuild trust and demonstrate a commitment to equitable care. This is vital for managing complex diseases like SLE. Institutional efforts to address SDoH can also influence policy and funding priorities at local, state, and national levels.

BHM: Given that the SDoH screening tool was tested and found to cause minimal disruption to clinical workflow, what steps are needed to make it a standard healthcare practice, and why should it be widely implemented?

Dr. Lim: Embedding the screening tool into electronic health record systems allows seamless integration into clinical workflows. Training healthcare staff on the tool’s use and the significance of SDoH is essential. Institutional leadership and funding mechanisms are also critical for long-term sustainability. Reimbursement models and partnerships with community organizations can support the implementation of SDoH screenings.

BHM: What are the best strategies for healthcare providers to engage patients in discussions about social determinants of health?

Dr. Lim: Healthcare providers must build trust through engaged listening, a nonjudgmental approach, and follow-through in addressing concerns.

Cultural competence is crucial, and providers should respect the cultural, social, and personal contexts shaping a patient’s experiences. Using inclusive language and open-ended questions helps create a welcoming environment.

Providers should also be equipped to connect patients with community resources and social services.

BHM: What long-term impacts do you anticipate from integrating SDoH screenings into routine care, particularly for marginalized communities?

Dr. Lim: Addressing SDoH early can prevent chronic disease exacerbations, reduce hospitalizations, and improve quality of life.

Integrating SDoH screenings can also strengthen trust between patients and providers and make healthcare more proactive and preventive.

Over time, this can reshape healthcare delivery by shifting resources toward upstream solutions that keep patients healthier.

Focusing on social determinants of health in lupus care isn’t just about ticking boxes. It’s about understanding the real-life challenges patients face. Dr. Lim and his team’s study is a call to action for healthcare providers to dig deeper and foster genuine connections with their patients. By acknowledging these social factors, we can create a more compassionate and equitable healthcare system that truly sees and supports every individual.

The post Social Determinants and Lupus Care in the Black Community appeared first on Black Health Matters.

BHM: Can you share your journey with psoriasis, including when you were diagnosed? How has it impacted your daily life and mental health?

Takieyah Mathis: My journey with psoriasis began in 2016. Though I likely had the disease earlier, that was the year I was first diagnosed. I feel like psoriasis impacted my daily life and my mental health because, around the time I was diagnosed, it had already affected my modeling career. It lowered my confidence, and I worried about how my hair and skin looked. I also had this pain in my foot from walking in heels. This all negatively contributed to my mental health as well because I wondered if I would ever look the same again.

I thought nobody would want to date, touch, or hang around me because I had this thing going on.

When I was diagnosed with psoriasis, that was the start of a new journey with my confidence and trying to build it back. Overall, my journey with psoriasis was long and drawn out at first, but when I got the proper medical help, I was successful with my treatments. I will say that having the right healthcare providers is critical—especially for finding the best treatments that work for you, whether you have mild psoriasis or severe psoriasis.

BHM: Have you personally experienced stigma or discrimination because of your psoriasis? How did you cope with these experiences?

Takieyah Mathis: Yes, I have experienced discrimination with my psoriasis with my employers and dating. I’ve had employers who wanted me to cover up my face with makeup, and that was disheartening because I didn’t realize what was wrong. I didn’t know my face looked so bad, which was hard to deal with.

I coped with these experiences by finding my community, finding other people who had eczema or psoriasis, and hanging around more with them. I also learned from my friends with alopecia, lupus, and other similar conditions. [Understanding more about]  autoimmune diseases and the stigmas also helped because when I had my first flare-up, I didn’t know what was going on. I just knew that when people saw me, they would almost diagnose me and ask, “Hey, do you have this?” I honestly didn’t know what I had; I just knew my face was broken out.

Eventually, I started to cope with all these experiences by taking my diagnosis and speaking out about it, not wearing makeup, showing people what my scalp looked like, showing them my scars, and just being vulnerable about what I was going through. People who supported me also helped me cope because now I know a community of people just like me, and I wasn’t alone.

BHM: As a patient advocate, what are some of the most common misconceptions about psoriasis you encounter?

Takieyah Mathis: As a patient advocate, I’ll say some misconceptions about psoriasis are that we’re contagious. Also, a lot of people look at some illnesses as a disability, almost as a crutch that they’ll have to deal with for the rest of their lives. I would also say that because people can’t see where you’re flared up all the time, they think that you’re not going through something with your psoriasis.

Another stigma is that many people believe that psoriasis is just one thing, just a skin rash, versus realizing it’s a whole system of things going on and that there are different types of psoriasis.

BHM: Has your experience with psoriasis influenced your work as an artist?

Takieyah Mathis: I feel psoriasis has influenced my work in a way that, at first, I panicked. Then later, I thought, “I’ve watched years of America’s Next Top Model and Winnie Harlow, so why did I panic? I’ve already been doing this for so long. Why did I go into this shell?”

At that point, I should be using this to my advantage, still being the model I am, and finding my way to embrace it as I’ve always embraced my modeling structure.

I’ve gotten back into modeling full time versus before, when I was just behind the scenes, becoming a stage director of many events. However, being a stage director also helped me because I realized there were so many other people like me behind the scenes. After all, they’re afraid of what their skin looks like or how they feel. I’ve met so many people in the last year who are behind the scenes, producing a show, and they have psoriasis, or they have rheumatoid arthritis or lupus or something along those lines. So, I think that’s influenced me enough to learn more about everybody’s story and why they do the things they do.

BHM: What role do support systems, such as family, friends, and patient communities, play in your journey with psoriasis?

Takieyah Mathis: I feel like everyone around me, including family, friends, and patient communities, has played a role in a way that makes me never want to give up. I just wanted to push forward a little bit. I know it’s hard to carry the torch sometimes or be the leader because you get drained and always have to play that role. However, other people can motivate you to keep going because some people don’t know how to be a voice for themselves. When people tell me that they’re proud of me and, “Oh, I know I can’t do it. So, I’m very proud she can do it for us.” That’s what keeps me going. That’s what the other patient communities and similar things do for me.

BHM: What advice would you give to others newly diagnosed with psoriasis, especially those in underserved communities who may face additional barriers to diagnosis and treatment?

Takieyah Mathis: The advice I would give to others who are newly diagnosed would be to find out or study your triggers.

For example, what do you think is making your psoriasis flare up? I would also say to find the best care and healthcare provider so you can find things that are for you and within your budget. This way, you’re not causing a flare-up because you’re stressing about finances, and stress is the number one factor with psoriasis.

As Takieyah shared, “Education would be the main change I would like to see. I want people to learn about what psoriasis is so that we don’t have so many people afraid to date people with psoriasis.”

Her words remind us that understanding and awareness are the keys to breaking down stigmas. By educating ourselves and others, we can create space for respect and acceptance in dating, friendships, and everyday interactions, appreciating the diversity that makes each of us who we are.

The post Psoriasis is More Than Skin Deep appeared first on Black Health Matters.

“This is the first time I’m writing about what I’m actually going through right now; it’s very cathartic,” Muni shared. “Part of my motivation here is being diagnosed with lupus. A lot of Black women, women, but specifically Black women, get diagnosed with autoimmune disorders because we suppress a lot of things.

The ‘strong Black woman’ trope is actually very toxic, and we should talk about our feelings. We should talk about what we’re going through.

“One song that just evokes a lot of emotion is the title track, ‘Revenge,’ because I talk about some domestic violence in the bridge. I don’t think a lot people understand that I’ve been through a lot, and I don’t talk about it,” Muni said.

“Muni disclosed that she was experiencing domestic violence while trying to embrace her success in the R&B world. When asked about the role of faith during these tough times, Muni shared how challenging it was to navigate her struggles while being told to pray.

“A lot of times, organized religion and old-school thinking will have you in bondage to some very misogynistic beliefs and ideals. And so, a man can do wrong a million times, and you should forgive him because that is the blank thing to do, right? It’s the right thing to do. It’s the Christian thing to do, it’s the feminine thing to do, it’s the wife thing to do, right?”

“But what about all this stress and drama and all that whatever, and him knocking me upside my [head]?

“How much of that should I take before a grown-up realizes I’m out of control and need help? There’s only so much you can do for somebody who doesn’t see the error in their ways. I was a little bit embarrassed that it was happening to me.”

“Muni continued, “I present myself as this very strong [person], which I am, but when you got somebody that’s like 200 pounds coming at you, it’s nothing you can do, you know? If you want to leave, they follow you. It’s very nasty. I don’t wish it on anyone. It’s not that I didn’t want to leave, but the way my life was set up, you don’t expect the love of your life to turn into your enemy.”

“Muni elaborated on the challenges she faced in getting proper support and acknowledgment for her domestic violence experiences from people in her personal life. She highlighted how her abuser skillfully crafted and maintained a specific image, all while neglecting the responsibility of genuinely embodying the persona that others believed.”

“As a mother of one, Muni was determined to change her circumstances. She planned to become a successful singer to escape.

She said, “I just knew no one was coming to save you. I walked down the aisle, so I’m gonna have to figure out how to get up out of this.”

“Viewers likely felt a sense of relief when Muni said, “I’m out of it. I’m free.” She bravely escaped her domestic violence situation and pushed forward, using her music as a personal diary. At the same time, she raised awareness and became an inspiration for domestic violence survivors everywhere.”

During her chat with Terrell, Muni shared that she hasn’t experienced any lupus flare-ups since leaving the toxic environment. This should make us consider how much our surroundings affect our health and well-being.

“Muni’s journey is a powerful testament to prioritizing your physical and mental well-being. Her resilience is truly commendable, and we hope her story inspires other survivors of domestic violence to find their paths to safety. Even if you haven’t experienced domestic violence yourself, it’s essential to believe and support those who have. Your understanding and compassion can make a real difference.

If you or someone you know is experiencing domestic violence, please call the National Domestic Violence Hotline at (800)-799-7233 or text START to 88788.

The post Muni Long Opens Up About Overcoming Domestic Violence appeared first on Black Health Matters.

But her perspective informed her story and made her an accomplished storyteller today. Having been diagnosed with lupus at 30, Alford has made adjustments, like learning to say no, but she can still define success on her terms.

Click to listen to our chat or read the transcript of our chat below:

00:00

Hi, everybody. I’m Corynne Corbett, editorial director of Black Health Matter, and I have the pleasure of chatting with an award-winning journalist, Natasha S. Alford, about her memoir, American Negra. Today, I want to focus on cultural issues, identity, hair, and health issues.

What were your challenges with cultural identity and growing up as a Puerto Rican/Black girl in Syracuse, New York.?

00:39

First, Corynne, thank you for having me on; I’m so honored to join you all. And you know, health is a part of this story, both from a cultural and identity perspective and just literally talking about physical health.

This story really highlights what it is like to grow up between two cultures. Growing up in a multicultural family, you’re often told you are both. In my case, I had very supportive parents. They’re like, you know, you are an African American Girl, you’re a Puerto Rican girl, nobody can take that away from you.

But I found that our society was not always accepting of the diversity within those cultures. And so there were a lot of people who sometimes questioned how I could be Latina. Some people asked me to sort of perform my identity; they wanted to know if I could speak Spanish or if I could cook certain foods.

And in all the African American side, although I was generally welcomed, right, most people saw me as a black girl, there were still questions about, you know, just what was my ethnic makeup? So I got a lot of questions of, you know, what are you, and people will look at my hair and be like, are you mixed? Are you something else?

So when you grow up with those questions constantly being thrown at you so early in life, you start to ask the question of yourself, what am I can I truly be 100% of both of these cultures. And so American Negra is the story of finding myself and my voice, but also finding my way as a young person, particularly regarding health and accepting what it means to live a healthy life.

2:19

Yeah, and that’s so important just finding yourself and I think everyone is finding yourself but when you also layer in health, culture and identity, that you know that’s a lot of things that add on to finding yourself right. So tell us how that played out in your hair story and how others saw you both in a Latina in the back cultures and how you saw yourself?

3:18

Hair is such a complex issue. It is an issue that can sometimes spark confidence, if you love the way you look you sort of move through the world in a different way. But if you lack confidence, that can also show up, you or question yourself, that can also show up when it comes to hair. Growing up as an African American and a Latina girl, what I found is that in one culture that my hair texture was celebrated. It was seen as exotic it was seen and long, curly, black hair, but when I was on the other side and looking at Spanish language media, I always saw straight hair. I always hair that was very, very long and Eurocentric, that was the standard of beauty. So in that culture, the texture of my hair, the African influence, the descendency, it would be more likely that me perming my hair would make me fit in.

4:33

So, looking back, what do you wish you could have told your younger self?

5:00

I see that I actually am most beautiful when I’m just myself. You know, I’m most comfortable, I’m able to move through the world with a freedom that I didn’t have before when I was trying to conform, whether it be with hair, or and just sort of presenting myself a certain way culturally.

And so yeah, I think it would be not to waste an ounce of time and that you know, there’s so many aspects of our society that want us to feel shame about our bodies about the way that we look. So we will spend money so we will we will change and there’s such power and taking back that narrative and saying I love myself the way I am.

5:41

So, I’ve got to tell you I was recently just last weekend at the National Black Writers Convention, no, National Black Writers Conference, and a woman, that was a vendor there, said, I want to give you a book recommendation American Negra, and she said, she loved it because she’s a Black woman married to a Panamanian man. And she has daughters. She said that she felt like this was something that she could see. She could give it to her daughters. As an example of, you know, this is a reflection of, you know, something that you can be proud of. This is how you can go up to live biculturally. And she was really, really excited about it. She was like this: this woman who wrote this book, she went to Harvard, you should read it. I said I’m reading, so she was, she’s issues, really excited about it. So you know, you are making an impact, and lots of different spaces.

So, let’s talk about your time at Harvard and how culture and identity evolved while you were there.

6:48

I am blown away, and I can’t believe that it is amazing.

07:10

Well, first, I have to acknowledge that the story is incredible. So thank you to that woman for being, you know, an ambassador for the book. That’s exactly why I wrote it in the sense of, even if you don’t have the exact ethnic background that I have, or you know, cultural background, that people who haven’t felt seen and representations of blackness and Latino ness and American identity see themselves. You know, the book explores what it means to go to a place and to learn that you belong. A lot of my struggles at Harvard, in some ways, were centered around belonging and centered around deservingness. There was a part of me, I think, this duality that WEB DuBois often talked about. There was a part of me that felt that I certainly belonged there.

But there was this other part of me that felt that I still had to prove I belonged there. And so it created a lot of pressure for me. Sometimes, academic insecurity, holding back in class, not using my voice, and not raising my hand are things that I think a lot of young people can relate to if they’re first or second-generation going to college. And so what American Negra does is it shows the journey of finding your voice, finding your confidence, you know, shedding imposter syndrome, and accepting your talents and gifts in that space. And one of the reasons I was able to do that was because of the Harvard Black community, which is a very strong community, a very deep-rooted community that has been around since really the beginning of the college. Black people have always been at Harvard. Harvard tragically built its institution in many ways off of the wealth of slave labor. And so even indirectly, you know, our existence is a part of this institution in this really interesting way, a really sad way. And yet, there have been so many brilliant scholars who’ve come through this place. And so what I wanted to show in American NACADA was our belonging. There’s a lot of conversation right now about DEI. And you know, whether, when people say DEI, they’re referring to Black people, even though DEI benefits so many, but it’s this question of do we deserve what we have, and I think the book really shows, both historically and in my personal story, what it means to know that you belong someplace and know that you deserve to be there.

9:35

Absolutely, absolutely. Now, let’s talk about the Dominican Republic for a minute. What did your time in the Dr. Contribute to your thoughts about being an Afro Latina?

9:53

Readers who see American Negra will see that the Dominican Republic was a turning point for me. I remember landing It was in 2005, the summer of 2005. And, or it was the summer of 2005 or 2006, I have to double-check. But when I got there, I was completely blown away by how many brown-skinned people were there. And it’s not brown in the sense of, you know, the way that we talk about Latina that in the US, we think of sort of tan. So, with just little hints of color, I saw black people everywhere. I saw Afro-descendants everywhere. They were speaking Spanish, you know, they were born and raised in the Dominican Republic. And many of them saw me and assumed that I was Dominican. And so, for the first time in my life, I’m experiencing what it is to blend in as a Latina, to sort of fit in not to be seen as another just because I’m black, but for people to assume just from looking at me that I must be one of them. So I talk in the book about what that does to me, you know, on an emotional level, but also intellectually, this sort of curiosity that it sparks for me to say, Okay, wait a second, I’ve been hearing that Black people have been across the diaspora for years, right, that there were boats that stopped in all these places. But what does it mean to really know that history? How are we connected? But also, what ways are we divided. And so I also learned a bit about the country’s relationship to Haiti. And times when, you know, the relationship was actually really devastating and violent. And so I talked about that in the book as well, which, you know, in modern times, is obviously very relevant to a lot of what we’re seeing in the news right now.

11:34

Yes absolutely so now let’s talk about your health receiving a Lupus diagnosis tell us that story.

11:48

Well, I was just turning 30, or I had just turned 30 years old. And when you turn 30, it’s a it’s a new phase of adulthood, but you’re still pretty young, right, there’s still some assumptions that you make about what it means to be a 30 year old. And so when I got this diagnosis, completely unexpected, you know, I was running in the gym one day and unable to move my wrists. All of a sudden, it felt like my legs were heavy weights with sandbags, tied to them. It took me a while to realize I even had to go to the doctor because I learned so early that the doctors only to be gone to when it’s an emergency. Other than that, you push through the pain. That’s the sort of culture that I came from. That was the kind of upbringing that I had and watching my parents and, you know, my family and the examples around me.

So by the time I went to the doctor, I was blindsided when I was told that I had lupus. Lupus is an autoimmune condition in which your immune system attacks healthy cells. So rather than attacking the invaders, it’s attacking healthy cells that can cause joint damage, organ damage, sometimes it manifests in skin rashes and other pains in the body.

But there’s also a mental toll, depression, and anxiety that comes with having an illness like this because your body is under attack, and it is so unpredictable, even with the different ways that you can manage it. And so what American Negra does is it takes you inside the experience of getting a diagnosis like this, but also what it means to get a diagnosis when you’re at the peak of your career, the right things are about to take off.

You know, you have high expectations for yourself, and how do you manage having big dreams with having a big illness? And so you know, it’s not easy; the spoiler is that it took me a while to accept it took me over a year before I really committed to taking my medication to go into the doctor to taking care of myself. And there were consequences to that which I do talk about but ultimately, the journey of acceptance was a really powerful one because then it allowed me to create a new normal for myself that didn’t require me sacrificing my health in order to succeed.

14:10

It’s an it’s, so let’s talk about lupus not just in the black community. It is also in the Latino community. It is yet so. So, raising awareness of this American mega is a vehicle that raises awareness about the prevalence of lupus is also an opportunity to discuss having lupus because also in our communities, we don’t talk about having autoimmune diseases. You know we keep quiet about these things because that’s our culture.

14:24

Yes

14:55

Yes, and I think that it’s a larger field. Share of American culture is that we put our work first, our health comes second, and there’s a lot of shame and stigma around being a person with a chronic illness because it begs the question, well, what can you do? How productive can you be? Can you still work? And so much of our value in this country is defined by what we do for work. So there’s a reeducation, I think that needs to happen. And you’re right that I’m trying to raise awareness about how this disproportionately affects different communities. First and foremost, lupus disproportionately affects women. So that’s just like across the board: women are more likely to get lupus. But then, when you look at race and the way that we categorize race, generally, in the United States, black women are three times more likely to get lupus than our white female counterparts. Hispanic women are also more likely to get lupus. And one of the questions I post in the book, it’s just because of the way that we track race, ethnicity, you know, for the black Latina, I don’t know what the exact numbers are, I’m not sure that anybody’s looking to see how we are affected by lupus, but they should certainly ask the question. And because of that, you know, we, as Black women, are already facing all of these stressors, right? You look at Black maternal mortality rates, you look at our rates of heart disease, you look at our rates of breast cancer. And so it’s yet another burden that we have to carry, which I think highlights the need for us to be open about it and talk about how we’re coping and getting through to lean on each other. And not feel shame because this is not something we asked for. There’s nothing that we did to deserve lupus, but we do deserve to live rich, meaningful, healthy lives, even despite having this illness. And so I hope to break the stigma by being so public about it at this young age.

16:10

Right. And so let’s talk about caring for yourself. How are you caring for yourself as you continue with your career? What adjustments are you making? Because it’s not that your life has stopped, right? But you make adjustments, and you carry on?

Yeah, certainly has it. Yeah. As the mother of a toddler, you know, between this book, being on CNN, and working at the Grio, it definitely has gone on. Life is going on. You know, I think the big difference between me now and before is that I know how to say no, I didn’t know how to say no before, anytime I was invited to do something. Anytime I had a chance to take on more projects, I did more work. I was doing it because that was how I was cultivated and acculturated, you know, to think that you have to grind and take every opportunity and make the most of it. Now, it’s all about quality over quantity, you know, the quality of my experiences, the quality of my relationships, the quality of the work I’m doing. That’s what matters more than squeezing everything I can into a day. And so even with this book tour for American Negra, we did, you know, the northeast, we went to all these cities DC, Boston, New York, Montclair, New Jersey, Syracuse, my hometown, Rochester, but I built in a pause, because I said, you know, the temptation will be to run myself down to the ground promoting this book. But I have to be a living example of what it means to care for yourself. And the truth is, I’m going to need a break. And so we will pick up the rest of the tour. We’ll go to the south. I’m going to Chicago next month. But I needed to live out those values even as I was doing something like promoting a book where I talked about having lupus.

18:55

[Fo] young women who are growing up in areas where not many people who look like them have their cultures and identities questioned. What should they do?

20:10

Well, I think the first step is realizing you’re not alone. Wherever you are in the world, you are not alone. There’s somebody who shares your experience. And so, even in this digital world where we have all these connections, it is very easy to feel isolated. And so I encourage you to find a community where you can find others who share your experience. That’s the first thing. But I think the second thing is that finding who you are is layered. There’s who you are at work, the jobs you enjoy, and the career you want. There’s also who you are in terms of your family story. One of the things I did in writing American Negrae was go and get genealogy assessments done. So I learned about my ancestry things that I had gone years, never knowing about my family. We were connected to a plantation in Darlington, South Carolina, and my ancestor was enslaved there. My ancestors in Puerto Rico worked in sugarcane fields, and you know, essentially me, these big, rich business owners even richer, but those were the histories that I had been denied. Because, you know, how often are you born and you only know your immediate family’s history. And so it was something about learning where it came from that was so powerful, and it made me feel so much more empowered. Again, it was much more like I belonged as an American; I deserved to be here and proud of what my family has contributed. So I encourage people to get to know themselves and maybe do some of that deeper work to discover your family story and your story. I think that it helps you to see yourself in context in a different way.

22:07
But it, it’s been a joy to talk with you. Thank you so much for having me. I want to encourage all your listeners to follow me I’m right on Instagram, it’s Natasha S. Alford, American negative also has its own Instagram account where we’re posting pictures from book tour events, people’s different reviews. It’s just its really community building is what we’re doing with this book. And you can learn more if you go to AmericanNegra.com is just N E G RA. But we are online and we’re doing this tour we’re traveling around the country went to Puerto Rico for an event. So if you don’t come to see me in person in person, you can always go online, and of course, you can get the book on Amazon, where it is a top book in African American history right now, even four weeks after it’s released. So go ahead and check it out and leave us a review, too. You too.

The post Natasha S. Alford: On Culture, Identity, Health, Hair and Her Book, American Negra appeared first on Black Health Matters.

Similar Conditions

Psoriasis in people of color shares clinical features with several other skin conditions. Understanding key similarities and differences can promote increased awareness and help to combat misdiagnosis of psoriasis.

Cutaneous lupus erythematosus (CLE)

CLE occurs when the autoimmune condition lupus impacts the skin. It presents on the skin in various ways. Associated symptoms include redness, rashes, and lesions. Lesions may appear to be raised or flat, with or without scales, and may be of varying shapes and sizes.

Skin involvement commonly occurs on the face, neck, arms, and other areas that are exposed to sunlight. Sun exposure may worsen the rashes and is a common trigger for CLE flares. It is recommended that individuals with CLE use sun protection measures to minimize the impact.

While psoriasis and CLE share some similarities such as being autoimmune conditions and the presence of skin lesions, they differ in their causes, patterns, and overall presentation.

Hypertrophic lichen planus

The exact cause of lichen planus is not fully understood, but it is believed to be an autoimmune or inflammatory condition. Hypertrophic lichen planus is a subtype of lichen planus characterized by thickened, raised, and sometimes hyperpigmented or reddish-brown lesions.

Physical presentation includes lesions that are shiny and waxy in appearance. These lesions may develop a fine, lace-like pattern on the surface. Unlike psoriasis, these lesions usually don’t have silvery scales. Skin involvement commonly includes the shins, ankles, wrists, lower back, and mucous membranes of the mouth and other areas of the body. Mucous membrane involvement is not a common feature of psoriasis.

Plaque psoriasis and hypertrophic lichen planus may both produce raised skin lesions, but they differ in their causes and affected areas. Additionally, psoriasis is a long-term condition and symptoms do not go away on their own as they usually do in lichen planus.

Cutaneous T-cell lymphoma (CTCL)

CTCL is a form of cancer, and its cells can spread to other parts of the body, including lymph nodes and internal organs. The exact cause is not well-understood. Patients with severe psoriasis are at greater risk of developing CTCL.

It often presents with skin lesions that may resemble psoriasis. Associated symptoms include red, scaly patches or plaques, itching, and skin thickening. Unlike psoriasis, CTCL lesions may not have the typical silvery scales, and they tend to be more persistent and treatment-resistant. CTCL can grow slowly or aggressively. Early-stage CTCL often has a favorable outlook, while advanced stages can be challenging to treat.

Plaque psoriasis and cutaneous T-cell lymphoma may be similar in how they appear on the skin, but they are very different in terms of their causes and treatment. CTCL often requires a more comprehensive evaluation and treatment plan.

Sarcoidosis

Sarcoidosis is an inflammatory disorder that presents with small inflammatory nodules in various organs. The exact cause is unknown, but it is thought to involve an abnormal immune response.

In cutaneous sarcoidosis, skin lesions often appear as firm, reddish-brown plaques. They can show up anywhere on the body, including the face, extremities, and midsection. Unlike psoriasis, skin involvement in sarcoidosis typically does not feature the silvery scales seen in psoriasis.

Both conditions can present with skin lesions, but they have different underlying causes and treatment. If you have concerns that you’ve been misdiagnosed with a skin condition, it is important that you discuss your concerns with your healthcare provider.

If you or someone you know has been diagnosed with plaque psoriasis learn more about the LATITUDE study.

References

• The Journal of Clinical and Aesthetic Dermatology. Special Considerations in the Diagnosis and Treatment of Psoriasis
• JAMA Dermatology Patient Page. Cutaneous Lupus Erythematosus
• Journal of Clinical Medicine. Topographic Differential Diagnosis of Chronic Plaque Psoriasis: Challenges and Tricks
• Metabolism Open. Understanding the enigmatic association between mycosis fungoides and psoriasis: Report of two cases and review of the literature
• JAMA Dermatology Case Report/Case Series. Sarcoidosis and Psoriasis
• A Case Series and Review of the Literature Exploring Co-Incidence vs Coincidence

The post Are You Sure It’s Psoriasis? appeared first on Black Health Matters.

She told the magazine, “I stopped taking all of my medication like five months ago,” Broadus reveals. “I’m just doing everything natural, all types of herbs, sea moss, teas. I started working out, drinking lots of water,” she adds. “So now I think my body’s like, okay, this is the new program, and she’s getting used to it.”

Lupus is an autoimmune condition that causes inflammation, leading to permanent damage in the skin, joints, heart, lungs, kidneys, blood cells, and brain, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Pain and aching in the muscles is common for those with lupus.

According to an article in the Mediterranean Journal of Rheumatology, “Stroke is a major cause of morbidity, mortality, and disability in systemic lupus erythematosus (SLE).”

 Patients under the age of 50 with SLE have up to a tenfold risk of stroke. For some people, a stroke may be the first time they discover a lupus diagnosis.

 

In addition, a study presented at the American College of Rheumatology a few years ago looked at 336 lupus patients in Georgia; 75% of them were Black, 87% were female, and most received a much later diagnosis than Broadus, with an average age of 40. They discovered 38 stroke-related and 25 ischemic heart-related events or deaths among them. These health issues occurred between two and 14 years after being diagnosed. Broadus was diagnosed 18 years ago.

“Ninety percent of strokes occurred in Black patients (with the peak number occurring in the second year after a lupus diagnosis),” according to CreakyJoints.org. While most of those who had a stroke were older than Broadus, 78% of those who did were women.

If you have been diagnosed with lupus, you must talk to your doctor about stroke risks, no matter what your age. In addition, we should all be aware of the signs of stroke. According to stroke.org, they are as follows:

• F— Face Drooping (Does one side droop or numb?)
• A—Arm Weakness (Is one arm weak or numb?)
• S—Speech Difficulty (Is your speech slurred?)
• T—Time to Call 911 (Act fast and also take note of the time symptoms began)

Additional symptoms include numbness, confusion, trouble seeing or walking, and a severe headache.

The post Cori Broadus, Snoop Dogg’s Daughter, Suffered a Stroke at 24 (How Having Lupus Factors In) appeared first on Black Health Matters.

While lupus can affect individuals of all ages and ethnic backgrounds, minority groups including Blacks are impacted the most, and women are affected more than men.² Black women are most impacted by this condition.³ Up to 60% of lupus patients will develop lupus nephritis.^1,5

What is Lupus Nephritis?

Definition

Lupus nephritis is a type of kidney disease caused by lupus. It is a common but serious lupus-related health complication, meaning only patients with lupus can develop lupus nephritis. It is caused by the body mistakenly attacking the kidneys, leading to swelling and scarring of the blood vessels that are responsible for filtering kidney waste.⁴ Men are more likely to develop lupus nephritis than women. Blacks, much like Asian Americans, Pacific Islanders, and Hispanics, remain at high risk for developing lupus nephritis.⁶

Lupus nephritis, if left untreated, may result in impaired kidney function or kidney failure requiring dialysis or a kidney transplant. It is also a risk factor for developing end stage renal disease. Severe forms of lupus nephritis may cause permanent kidney scarring. Patients with lupus nephritis are at a higher risk of developing certain types of cancer and heart problems.¹ There is no cure for this disease, but treatment can help manage symptoms and prevent disease progression.

Signs and Symptoms of Lupus Nephritis

Signs and symptoms of lupus nephritis may vary. Symptoms may not be noticeable at onset of the disease, and it may take up to 5 years after lupus symptoms appear to recognize symptoms of lupus nephritis.⁵ Potential symptoms should always be evaluated by a healthcare professional to confirm or rule out a diagnosis of lupus nephritis. The most common symptoms include^1,4-6:

• Weight gain
• Swelling (usually in the legs, feet, or ankles)
• Urine changes
  • Frequent urination
  • Blood or protein in urine (may only be visible under a microscope)
• High levels of waste (creatinine) in your blood
• High blood pressure

Lupus Nephritis in Blacks

Why are lupus and lupus nephritis more common in Blacks? We don’t know. Some experts believe it may be related to genetics, however there may also be hormonal and environmental causes.^3,6 Additional research is needed to help better understand and evaluate this condition.

Importance of Clinical Trial Participation

A surprising 63% of Americans surveyed had limited knowledge of lupus and its symptoms or had never heard of the condition. This proves there is still much work to be done in raising awareness and knowledge surrounding lupus and its complications.²

Clinical trials allow researchers to contribute to improving quality of care and identifying and exploring better treatment options. Clinical trials for lupus have not had much success recruiting minority patients to participate. Unfortunately, Black patients are underrepresented in clinical trials due to a number of barriers such as limited knowledge of clinical trials and when they occur, feelings of anxiety and lack of trust surrounding clinical trial participation, and limited education about the disease.⁷

Blacks make up around 12% of the United States population but are only represented in clinical trials at a low rate of 5%.⁷ In order to gain more insight and reduce health disparities, it is important to increase participation of Black patients in lupus-related clinical trials. If you have been diagnosed with lupus nephritis (LN), you may be able to participate in an important new study and potentially avoid further damage to your kidneys. Learn more here.

– – –

References:

1. NIH – Lupus and Kidney Disease (Lupus Nephritis)
2. Lupus Foundation of America – Lupus Facts and Statistics
3. CDC – Systemic Lupus Erythematosus (SLE)
4. National Kidney Foundation – Lupus and Kidney Disease (Lupus Nephritis)
5. Lupus Foundation of America – What is Lupus Nephritis?
6. American Kidney Fund – Lupus Nephritis: Symptoms, treatment, and complications
7. NIH – The State of Lupus Clinical Trials: Minority Participation Needed
8. National Kidney Foundation – Are Clinical Trials Safe?

The post What is Lupus Nephritis and Why Is It More Common in Blacks? appeared first on Black Health Matters.

But what is screening these days? The American Cancer Society recommends the first screening (and HPV test) at age 25. It also recommends a primary HPV test* every five years up to age 65. If primary HPV testing is unavailable, a co-test that combines an HPV test with a Papanicolaou (Pap) test every five years or a Pap test alone every three years. This is important for you to understand because women with SLE have a higher incidence of genital infection.

A study by J. Patricia Dhar, M.D., a Clinical Professor of Medicine and a rheumatologist at Wayne State University, used a self-sampling brush to collect cell samples for HPV screenings. The cells were tested for HPV genetic information, gene activation of local inflammatory factors, or cytokines, in the vagina, and cervical cytopathology.

The results showed that 70% of the 30 study participants, all Black women, showed infection with HPV, and half of those showed multiple HPV types. Subjects also had a higher-than-expected frequency of abnormal pre-cancerous Pap smears.

In an interview, Dr.Dhar said, “I did expect they would have higher rates of HPV infection and abnormal Paps based on my experience, but I did not expect to see multiple HPV types, including new types that are just being identified as being high risk for cancer,” she explained. “It verified what I was trying to demonstrate – that this is a high-risk population and needs more monitoring for cervical health.”

So what does this mean for you?

1. Use condoms to prevent transmission of HPV.
2. Stay on top of cervical health screenings (gynecological examinations, Pap smears,  HPV screenings, or co-tests).
3. Get the HPV vaccine if you are eligible for it.

The post Are You a Black Women With Lupus? Why Cervical Cancer Screenings Are a Must appeared first on Black Health Matters.

Check out these recruiting trials: Funded by Bristol Myers Squibb.

The post Adrienne Nicole Talks Lupus Advocacy & Clinical Trials appeared first on Black Health Matters.

Sanders has been battling circulation problems in his arteries, which carry oxygenated blood away from the heart. The blood clots in his leg have led to blockages, restricting blood flow and depriving the tissues of oxygen. The consequences of reduced blood supply can be severe, potentially leading to tissue death.

The Relationship Between Blood Clotting and African American Men

Research indicates that African American men have a higher risk of developing blood clots compared to individuals of other races. Black populations, regardless of age or gender, exhibit higher rates of deep vein thrombosis (DVT), which is the formation of blood clots in deep veins. DVT can be a life-threatening condition, causing thousands of deaths annually in the United States.

Potential Causes and Risk Factors

Several factors contribute to the increased risk of blood clots among African American men. These factors include:

• Genetic Factors – Certain genetic traits, such as the sickle cell trait and other mutations associated with blood clotting, are more prevalent in Black populations. These genetic variations can predispose individuals to a higher risk of blood clot formation.
• Chronic Health Conditions – African American men often have a higher prevalence of chronic health conditions, including high blood pressure, diabetes, chronic kidney disease, and metabolic syndrome. These underlying conditions can contribute to the development of blood clots.
• Heart Disease – Black men have higher rates of heart-related health problems, such as strokes, coronary artery disease, and heart failure. These conditions can exert pressure on blood vessels, increasing the likelihood of blood clot formation.
• Lupus –  Lupus, an autoimmune disease more common among Black women and men, can lead to chronic inflammation in the body. Individuals with lupus have a higher incidence of blood clot formation.
• Smoking and Secondhand Smoke Exposure: African American men have higher rates of exposure to secondhand smoke, and a significant percentage of Black smokers prefer menthol-flavored cigarettes. Smoking and exposure to tobacco-related products can raise the risk of blood clots.

The challenges being faced by Deion Sanders highlight the seriousness of these blood circulation conditions and their potential impact on African American men. Understanding the underlying causes and risk factors can help individuals and healthcare professionals identify and manage the risk effectively.

By promoting awareness and implementing preventive measures, we can strive to reduce the burden of blood clot-related complications in this population.

The post Deion Sanders Highlights African American Risk For DVT & Blood Clotting Issues appeared first on Black Health Matters.

What is chronic kidney disease? What are these healthcare disparities? What gene mutations make Blacks more susceptible to this disease? Read on for these answers and more.

What is Kidney Disease?

Kidney damage causing chronic kidney disease (CKD) is more common than you think. Diabetes and high blood pressure are the two most common causes, but many autoimmune disorders (like Lupus) also target the kidneys. Becoming severely dehydrated often or recurring urinary tract or bladder infections can contribute to kidney disease over time. Polycystic kidney disease is one type of this disease that is usually genetic, causes more kidney damage over time, and affects how well the kidneys filter blood.

When kidney function is compromised, one or both kidneys cannot filter blood as efficiently as necessary to keep you healthy. Toxins build up in the blood, making you feel sick and possibly damaging other organs. The condition may be temporary while you recover from an illness, but more often, the disease is long-term with a gradual loss of function.

Common Symptoms

Some signs of chronic kidney disease are easy to overlook because they can mimic symptoms of minor illnesses like dehydration. This could be feeling tired or having dark urine. If you already have diabetes, you may be used to swelling in your lower legs. However, some symptoms are a warning sign of chronic kidney disease, and you should address these with a healthcare provider as soon as possible.

• Nausea or vomiting
• Cramps or muscle spasms, especially in the lower legs
• Confusion or trouble concentrating
• Trouble sleeping
• Dry, itchy skin
• Metallic taste or poor appetite

Risk Factors for CKD

Many people are at increased risk of developing chronic kidney disease and aren’t aware, while many others already have lowered kidney function without realizing it. Kidney disease progresses quickly without treatment. If you have one or more risk factors listed below, you should discuss them with your healthcare provider.

• Diabetes
• High blood pressure
• Heart disease
• Over age 60
• Long-term use of pain relievers (particularly NSAIDs)
• Family history
• Ethnic background

Kidney Disease Treatment

The five stages of kidney disease range from very little damage and normal function in the early stages to end-stage kidney disease with little to no function. Complete kidney failure requires dialysis to remove the waste product from your blood and an eventual kidney transplant. CKD treatment will vary depending on kidney function, co-existing health conditions, and other factors. You will work closely with your kidney doctor, any other specialists needed, and your primary provider to ensure you can manage the progression of the disease as best as possible.

Why is Kidney Disease Different for Black People?

Any chronic illness brings many challenges, but Blacks facing CKD experience more of them. From biology and DNA to racism within the healthcare system, kidney disease differs for the Black community.

Systemic Racism

Racism has been ingrained within the healthcare system for decades. There are several ways in which Blacks experience systemic prejudice, including accessing or being offered healthcare resources or services.

Access to Healthcare

It is widely reported by research organizations, university publications, and others that healthcare disparities exist within the black community. Those living in poorer neighborhoods may not have access to well-equipped medical clinics or adequate health insurance. Many black Americans don’t have a primary healthcare provider for preventative care, even for such conditions as high blood pressure, or access to specialists like a kidney doctor, so early detection of most chronic illnesses is challenging.

The black population is less likely to receive testing for chronic illness if suspected, even routine urine tests, or be referred for advanced care if warranted. These healthcare access disparities are being addressed, but change has been slow, and has led to lower quality of life for many suffering from a long list of diseases and not just those affecting the kidneys.

Diagnosing Kidney Failure in African Americans

GFR is a standard blood test that measures the glomerular filtration rate, giving healthcare providers an estimate of how well your kidneys function. A long-standing belief within the medical community was that GFR results were higher for African American adults. There weren’t many clinical studies to support this theory, so a task force was created to reassess the notion. After ten months, no evidence was found, and the task force recommended that all healthcare providers immediately apply the same GFR equations to both African American and Caucasian patients. These tests are now more accurate and early detection is much easier.

Racial Bias in Transplants

NBC reported in February 2023 that changes had been made to how patients’ priority is determined when added to the kidney transplant waiting list. According to the report, Dr. Martha Pavlakis says that “the inclusion of race variables is inaccurate,” and the outdated GFR lab test is now banned. African Americans on the list will be credited with time, meaning they could receive a kidney transplant one to two years sooner than expected. Before this change, the average wait time for an African American was 64 months compared to 37 months for a non-Hispanic white person.

A study published by Current Transplantation Reports supports this, citing “structural racism” as a leading cause of Blacks’ lower access to living donor kidney transplantation (LDKT).

Co-existing Conditions

Diabetes and hypertension (high blood pressure) are the leading causes of kidney diseases. The Office of Minority Health at the US Department of Health and Human Services reports that there are nearly twice as many black Americans with diabetes than non-Hispanic white people. According to the American Heart Association, over half have high blood pressure. It is more likely to develop early and become more severe. Many fall into both categories as one is a risk factor for the other.

Other conditions are also risk factors for kidney disease, like cardiovascular diseases, disproportionately affecting the black community. Black women are especially vulnerable to autoimmune diseases, like Lupus, that attack the kidneys and sometimes lead to using NSAIDs to control joint pain.

Treatment for chronic kidney disease often requires treatment of underlying health conditions, which requires access to consistent healthcare and medications. In some communities experiencing economic disparities, this can create many challenges.

Genetic Predisposition

In addition to underlying medical conditions, a common gene mutation may increase their risk. Dr. Opeyemi Olabisi of Duke University describes this mutation and its effects for the New York Times. The APOL1 gene is found in the DNA of those with sub-Saharan or Afro-Caribbean ancestry as a defense against African trypanosomiasis. This disease, also called sleeping sickness, is caused by a parasite. While the normal gene has been helpful for millennia, those that inherit two copies of the mutated gene are much more likely to develop kidney disease. This is similar to a gene that naturally developed an immune response against malaria but made current generations more usceptible to sickle cell disease.

Medications currently being tested could help target these gene mutations to help treat chronic kidney disease in the black community at its source. Genetic testing may help determine who is at risk, but there’s no guarantee that a person with both mutations will develop the disease. However, knowing about their vulnerability could lead to high blood pressure and added stress, leading to another risk factor.

How Are Things Changing?

Thankfully, the healthcare system is slowly changing to ensure everyone gets the care they deserve regardless of race or income level. These changes are slow but happening nonetheless. Just a few of the transformations we’ve seen so far include the following:

• Addressing Social and Economic Disparities
• Better Access to Culturally-Competent Care
• Healthcare Education
• Preventative Medicine
• Better Understanding of Kidney Function
• Faster Referrals for Kidney Transplant
• Less Bias in Receiving a Transplant
• Genetic Testing When Appropriate
• Targeting of the APOL1 Gene

Chronic Kidney Disease in African Americans

It may take time for every community to see the effects of reform. Still, we hope that more awareness of these disparities will soon affect even more positive change, allowing those suffering from kidney disease to experience a better quality of life through every stage of the condition. Black Health Matters has the privilege of working with amazing people and organizations to help spread this awareness.

If you or someone you know is diagnosed with chronic kidney disease, know that there are studies and tests underway for new treatments and changes within healthcare every day to make getting those treatments easier once they are available.

The post The Realities of Kidney Disease Within the Black Community appeared first on Black Health Matters.

Some races are disproportionately affected by bipolar disorder, although they experience symptoms similarly. African Americans with bipolar disorder have manic symptoms and depression just as non-Hispanic White people with bipolar disorder do. However, healthcare inequities and other barriers create unique and daunting challenges.

Below, we examine some of these challenges, what we can do to confront them, and African Americans who are doing just that.

Types and Symptoms of Bipolar Disorder

Symptoms of bipolar disorder vary depending on the type and severity. The three most common types of these mood disorders are cyclothymic disorder, bipolar II disorder, and bipolar I disorder. All three include depressive symptoms and manic episodes, although in varying degrees of intensity.

Mania typically lasts a week or more with symptoms ranging from racing thoughts, distractibility, and restlessness, to increased risky behavior and decreased sleep. Depressive symptoms include fatigue, difficulty concentrating, feelings of worthlessness, and loss of interest.

• Cyclothymic Disorder: This is the milder form of bipolar. It includes many of the symptoms of hypomanic and depressive symptoms, but these symptoms may not be severe enough to qualify as true episodes.
• Bipolar II Disorder: Bipolar II disorder requires at least one hypomanic episode and one depressive episode within the previous two years. It is often accompanied by anxiety disorders or substance use disorder.
• Bipolar I Disorder: The inclusion of manic episodes and depressive symptoms indicate Bipolar I disorder.

Barriers to Care for Black People

African Americans experience symptoms of bipolar disorder the same and in similar numbers, but their care is vastly different. This is because of the barriers they face, mostly caused by a delay in treatment for a variety of reasons, from hesitation on a personal level to socioeconomic factors.

Hesitation

Many people with bipolar disorder, regardless of race, hesitate to seek treatment because of stigma around mental illness. For African Americans, this reluctance is compounded by several factors, including a mistrust of the national health care system. This mistrust is not without reason, although it can sometimes hurt those who could benefit from a mental health evaluation and possible treatment. Another reason Black Americans may wait to speak to a provider is an ingrained sense of “toughness” when overcoming whatever challenges they face. This cultural barrier has become a wall between African Americans and the health care system.

Misdiagnosis

While misdiagnosis in mental disorders is more common than physical ones, it seems to be more prevalent among Black people with bipolar disorder than other races. The most commonly misdiagnosed condition is schizophrenia. While several anti-psychotic medications can treat both schizophrenia and bipolar disorder symptoms, the mental illnesses are treated differently by providers, especially therapists. Appropriate care is vital to long-term quality of life when living with a mental health condition, so misdiagnosis among African Americans can pose complications long-term.

Lack of Providers

The American Psychiatric Association and American Psychological Association have determined one barrier to proper mental health care for African Americans is a lack of Black providers. Over 13% of Americans identify as Black compared to only 2 percent of psychiatrists and 4 percent of psychologists. There is already a shortage of providers, which makes finding care challenging in some locations, let alone finding one experienced in treating bipolar disorder that an African American can relate to and feel comfortable working with.

Lack of Health Insurance

Hispanic Americans continue to report the highest numbers of uninsured, at over 2.5 times that of White Americans. However, African Americans are still suffering the effects of a lack of health insurance with 10.9% reporting have inadequate or no health insurance compared to 7.2% of non-Hispanic White people. These findings, reported by the Kaiser Family Foundation, show that the number of un- or underinsured are declining, but more needs to be done to ensure that everyone has equal access to mental health care.

Vicarious Stress

Personal trauma is difficult to process and often results in PTSD, anxiety, depression, and other mental disorders. However, vicarious stress is trauma from supporting others you know or even your community with their trauma. It could be the death of a friend’s loved one or an act of violence that occurred near your home. African Americans are subjected to vicarious stress in many ways, including acts of racism. Because many in the community feel that they aren’t the only ones to struggle with it, they often feel as if they shouldn’t need to seek help when that struggle becomes too much. Long-term exposure to vicarious stress can affect mental health as well as physical health. One BeWELL study found that it has a profound effect on those with systemic lupus erythematosus (SLE).

Confronting the Problem

While we know these mental health barriers exist, more needs to be done to bring them down so African Americans facing bipolar disorder can get the care they need.

Address Systemic Racism

Hesitation and misdiagnosis are only two of the many possible outcomes caused by systemic racism. Many youth are directed to the juvenile justice system instead of receiving the mental health care they need. We can only address these problems and others by resolving the racism so prevalent within the mental health care system. According to a study published in the American Journal of Psychiatry, this can only be done with education and self-reflection, by changing social norms, and addressing public policies.

Relevant Training for Providers

The government-funded Substance Abuse and Mental Health Services Administration (SAMHSA) has established the African American Behavioral Health Center of Excellence. This center supports behavioral health systems across the country better support Black communities with better intervention and treatment options, education and training for professionals, and much more. There are continued efforts being made on the state level and within communities to train existing providers.

Encourage More African American Mental Health Providers

Through scholarships and college recruiting efforts in schools, we can raise awareness of the dire need for mental health providers in the African American communities. While it will take years for future and existing students to complete the required coursework and enter the workforce, these efforts need to begin now so that a new generation of Black people can benefit from having a more diverse population of providers from which to choose.

Black People with Bipolar Disorder

African Americans are helping to sponsor support groups and scholarships through non-profit organizations and social media platforms. Some of your favorite celebrities may even understand mental illness more than you realize. Let’s look at a few Black people with bipolar disorder.

Rwenshaun

Rwenshaun Miller didn’t know how to recognize bipolar disorder let alone seek help for it. This is common for many African Americans, but males especially. Another hurdle he faced was overcoming what he’d been taught from a young age about mental health. As a Black male, it was never okay to show your emotions, to share them, or to seek help if something was off about them. He describes the genuine fear of being too loud, boisterous, or angry in public because of the threat of violence that could result in tragedy, as it has for others. A manic episode could become difficult to manage, compounding these fears. He spiraled into depression, alcoholism, and lost weight.

Like many bipolar patients, his first attempt at treatment was not successful. It wasn’t until he saw an African American male therapist that he could connect with that allowed him to embrace therapy and other treatment options. He now heads Eustress Inc, an organization that awards scholarships to Black men pursuing a career in mental health services.

Lindsay

Lindsay Anderson understands the weight of living a challenging life with a career, school, being a mom, supporting her own mom, and being an African American woman with bipolar disorder. She was once told that “Black women over exaggerate everything” when having a conversation about the many conflicts she struggles with, without mentioning the mood episodes that she experiences. These mood swings caused by bipolar disorder make managing the many external burdens an internal one that can be difficult to endure. Lindsay understands more than most what it means to be an African American with a mood disorder in a time when most are advocating for more open communication about mental health.

For many Black women, it’s not as simple as opening up to share their story and daily battle with mood episodes. Instead, most are discounted or pushed aside as overstated or untruths. As an advocate for mental health, Lindsay is the founder of Consciously Coping, a network of social media platforms aiming to support Black women living with mental illness through transparency.

Famous People

Even fame and money can’t cure this lifelong illness. Do you recognize any of the names listed below? If so, realize that you aren’t alone in living with bipolar disorder, no matter what form. Many celebrities work diligently to raise awareness of mental health and the importance of seeking help, no matter the illness or symptoms.

• Ye (Kanye West)
• Mariah Carey
• Chris Brown
• Lisa Nicole Carson
• Jenifer Lewis

Bipolar in Black People: A Bigger Mental Health Problem

As you can see, facing bipolar disorder as an African American is no small challenge. However, many are standing up to the challenge, as well as standing up for others by raising awareness and becoming advocates for their communities. Black Health Matters is one such advocate. We hope you’ll become advocates with us this May for Mental Health Awareness Month.

The post Unmasking Bipolar Disorder: Challenges and Solutions for African Americans appeared first on Black Health Matters.

Exposure to UV rays can be damaging to anyone and not lupus patients exclusively. If you have lupus you are more sensitive to the inflammation that occurs as a result of this exposure.³ Common symptoms related to photosensitivity include skin numbness, joint pain, fatigue, fever, and skin rashes.² It may also make existing skin issues worse.³ Black patients may also notice that the rashes occur more prominently on the ears and scalp, and they can be damaging to the skin.

Medications may also play a role in contributing to photosensitivity.¹ Some lupus drugs may make photosensitivity worse, and others may be protective against it.^1,3 Consult with your healthcare provider if you have concerns regarding your lupus medications and photosensitivity risk.

Have you been diagnosed with moderate to severe lupus for at least 6 months and are you currently taking medication for your lupus? If so, you may be eligible to participate in a clinical trial at no charge to you for an investigational drug that could help your condition. Click here to learn more.

Protect Yourself

Protecting yourself from harmful UV exposure indoors and outdoors should be a priority when it comes to managing lupus. If you have lupus, there are proactive steps you can take to protect yourself and prevent flares.

Avoid Unnecessary Exposure

If you have to participate in an outdoor activity or be outdoors for an extended period of time try to plan ahead if possible. Scheduling to be outdoors in the early morning or late afternoon may limit your UV exposure.⁴ Sunlight exposure may be highest during the hours of 10 am-4 pm.³ Even if the sun is not visible or it appears to be cloudy or cooler out, you may still be exposed to UV rays so use caution.⁴ It is also important to remember that sitting in shaded areas may not provide 100% protection since UV rays can reflect off of other outdoor surfaces.³

You can limit exposure to indoor UV light by choosing low-intensity light bulbs such as LED bulbs, covering fluorescent or halogen bulbs with shields or filters, using shades to cover windows, and turning off lights you are not using.^1,3 If you frequent the nail salon, request services that do not require the use of UV drying lamps such as dip powder.³ Consider tinting your car windows and driving with the windows up to protect yourself on the road.³

Wear Protective Clothing

Follow these tips regarding sun-protective clothing.⁵

• Choose clothing that is tightly woven.
• Choose darker colors or bright colors rather than light colors
• Wear hats with a brim all the way around.
• Look for clothing that has an ultraviolet protection factor (UPF) of at least 30.
• Consider full coverage and full-length options when choosing skirts, pants, shirts, and swimwear.
• Wear sunglasses with a UVA/UVB rating of 100%.

Choose the Right Sunscreen

There is a misconception that people with darker skin tones don’t need to wear sunscreen, but this couldn’t be further from the truth. Dermatologists recommend that everyone should wear sunscreen every day on skin that is not covered by your clothing, even if you do not go outside. You should use a broad-spectrum sunscreen with a sun protection factor (SPF) of at least 60 for adequate protection.⁴

Photosensitivity is common among patients with lupus, but there are steps you can take to protect yourself. Making a few adjustments and preparing ahead are key to protecting yourself and preventing complications related to sun sensitivity.

– – –

References

1. Lupus Foundation of UV exposure: What you need to know
2. Lupus
3. Lupus Foundation of Tips for managing sensitivity to light
4. Lupus Foundation of Lupus and the Skin
5. Lupus Foundation of 10 Wearable Ways to Protect Yourself Outdoors

The post Lupus and Sun Sensitivity: Protect Yourself appeared first on Black Health Matters.

But misperceptions about that underrepresentation persist. A recent summit hosted by Black Health Matters sought to debunk the myths the medical community has used to explain the lack of Black participation in clinical research, with the goal of turning the tide.

“We’re looking to get Black people more involved in clinical research, because without it, we won’t know if these medicines are effective for people like you,” Denise Bronner, Ph.D. Janssen Diversity’s director of equity and inclusion in clinical trials, told the audience.

First, a key statistic: While around 14% of Americans are Black, they account for less than 5% of trial participants. This is a major concern because there are several diseases that have a specific impact on Black populations.

Lupus, for example, disproportionately affects Black women, and its progression can vastly differ when compared to White women. That is why diverse representation in clinical trials is essential as it helps to identify treatments that work as well as the differences in disease progression across all demographics.

Dr. Bronner, along with Melanie Igwe, co-founder and chief operating officer of digital health platform ViuHealth, debunked three myths that are likely impacting the participation rates of Blacks in clinical trials as part of their call to action:

Myth #1: Black participants simply do not exist. The medical research community—trials sponsors and biotech companies who create the medicines—often say prospective Black participants do not exist. And while that is used as a justification for low participation, that simply is not true, said the panelists.

Dr. Bronner stated that intentional outreach is necessary, not only through education and raising awareness in Black communities, but also by building an enduring alliance with the people in those communities. “Because on several occasions, companies will come into communities to set up shop, get what they need in terms of patients and data then leave. And we cannot continue to let that happen,” she said.

She pointed to ViuHealth’s efforts to diversify research and make clinical data more representative. ViuHealth not only consolidates patient medical records, they also help them identify trials that are available in their area. Thus far they have ~40,000 patients in their ViuHealth database and 30% are Black (~12,000), a number that continues to grow month to month!

Myth #2: Blacks are not interested in clinical trials. It is true that Black people have a historical distrust of clinical research as a result of the Tuskegee study and other medical atrocities. But clinicians and sponsors need to make an effort to go into Black communities to gain trust, address concerns, and change the narrative about medical research, the panelists said.

“It is wholly incumbent for us to reimagine the way that we are looking at care and look at it in a more collaborative capacity,” said Igwe. “Because once you’re able to do that and once you’re building these inroads, you understand some of the myths you believe are lacking in any kind of reality.”

Igwe said of the patients ViuHealth has recruited to date, 45% have been diverse, and of that 45%, 50% of them are Black. She attributed those numbers to the explanatory information about clinical trials that is featured on the platform as well as ViuHealth’s effort to match participants with a “study buddy” for support throughout the lifecycle of the trials.

Myth #3: Patients are most likely to drop out of clinical trials. Dr. Bronner noted a common physician belief that because their Black patients often stop taking their prescribed medications, they would similarly drop out of clinical trials.

She highlighted that medical professionals fail to acknowledge how medicines are impacting the patient’s quality of life or whether insurance coverage has become an issue for the patient. As a result, they are falsely assuming Black patients will not remain in clinicals trials. In these instances, “physicians are the barrier,” said Dr. Bronner.

Igwe added that health literacy is important, that patients need to be empowered with information to have impactful conversations with their physicians. ViuHeath makes sure it provides patient-facing materials to help spark conversations between individuals and their physicians about their care. Additionally having a study buddy to guide the patient through their trial journey provides the reassurance that patients seek.

Because of that investment, Viuhealth’s patient retention is high—greater than 60% of patients are remain in a study they were eligible for. “If people feel supported…people will know you have their best interest at heart, and as a result, really demonstrate the behavior you’re trying to show to them that is good for their health.”

The post 3 Myths That Are Keeping Black People Out of Clinical Trials appeared first on Black Health Matters.

The cause was cardiac arrest brought on by a rare blood disorder called acquired thrombotic thrombocytopenic purpura, or aTTP.  It develops when the immune system stops the enzyme ADAMTS13 from working properly. Without this enzyme, the body creates too many clots, which blocks the flow of blood to such organs as the brain, kidneys, and heart.

In the case of Wynn, the blood clots formed in her heart. When she went to the ER, doctors noticed small, flat red spots under the skin called petechiae—a symptom of aTTP. While they knew to test for the disorder, they didn’t get a chance to give her plasma exchange, which is one of the main life-saving treatments for aTTP.

Medical professionals say that not all doctors would even know to test for the disorder in the first place. aTTP is diagnosed at a rate of only a few people per million each year worldwide. Symptoms can include petechiae (as mentioned earlier), pale or yellow skin color, headaches, and shortness of breath.

These signs and symptoms of aTTP tend to appear most frequently between the ages of 30 and 50.  Although it usually begins in adulthood, it can affect children. Black women, like Wynn, appear to have the highest prevalence of aTTP. It is also 2.5x to 3.5x more common in women than men. And African Americans have a 7-fold higher incidence than Non-African Americans.

It’s unclear what triggers aTTP, but some factors may play a role, including:

• Some diseases and conditions, such as pregnancy, cancer, HIV, lupus, and infections
• Some medical procedures, such as surgery and blood and marrow stem cell transplant
• Certain drugs or medications, including chemotherapy, hormone therapy, and estrogen-based medicines (such as oral contraceptives)

The increased blood clotting that occurs in aTTP occurs suddenly and lasts for days or weeks, but it can continue for months. aTTP can be fatal. Without prompt treatment, it can cause long-term problems, such as brain damage or stroke.

Treatment with plasma exchange, corticosteroids, and other immunosuppression treatments stops symptoms in most people with aTTP.  In recent years, there has been a treatment approved for aTTP that can be used in addition to this care regimen for faster clinical response.  But, in up to 60% of people who’ve been treated, the disease comes back, or relapses. Usually the relapses happen in the first 1 to 2 years after aTTP was first diagnosed.

Once an acute aTTP episode is resolved, a number of long-term side effects could appear in the form of headaches, hypertension, memory impairment, and a higher risk of death.  These side effects can affect mental health, sometimes causing depression and post-traumatic stress disorder as well.

Still, more research on aTTP, particularly the incidence of the disease in Black women, is needed. James Wynn, Resheemah Wynn’s brother, started the Ree Wynn Foundation along with his late mother mere days after she died. At the time, his mother told friends and family who wished to give bereavement gifts to donate to an aTTP foundation instead. But the family struggled to find one, says James.

That spurred the Wynns into action. “My mom told me, ‘we’re going to start our own foundation,’ and that I needed to figure out how to do it,” says James, who had previously worked at non-profit organizations.

The Ree Wynn Foundation aims to increase awareness and support research efforts for treatment of aTTP. It also raises funds to provide grant opportunities for organizations committed to reducing complications and fatalities. The foundation has a particular focus on women’s health, since this population is most affected by the disorder.

James says the majority of the people who come to the Ree Wynn Foundation share that their aTTP episode had been originally diagnosed as something else. And the results would have been more dire had they not ended up at a teaching hospital specializing in hematology or blood disorders.

“My charge to the Black community is to help us to push for a checklist that will at least help doctors identify and rule out aTTP before the physical symptoms start,” says James. “It’s very difficult for anyone to identify what is causing you to have these symptoms [that are actually caused by aTTP].”

Clare Martin, director of operations at The United States Thrombotic Microangiopathy (USTMA) Consortium, says that fortunately, patient voices are being heard when it comes to raising awareness about aTTP. The USTMA Consortium consists of a group of researchers whose aim is to improve outcomes of aTTP through observational studies, clinical trials of novel therapies, and translational research.

“Before, there were aTTP symptoms, like headaches, that were common in patients but not recognized by the medical community,” says Martin.  “But now the people that are needing help are being listened to and given the necessary resources to address this illness.”

She adds that this discovery of headache as one of the symptoms for aTTP was due to aTTP-focused support groups led by hematologist Dr. Jim George at the University of Oklahoma.

​​If you have symptoms that seem to point to aTTP, make sure to advocate for yourself—and ask your doctor about this rare disease.

A healthcare contribution for this article was provided by Sanofi.

The post You May Have This Disorder—And Not Even Know It appeared first on Black Health Matters.

Focal segmental glomerulosclerosis (FSGS) affects the filters in your kidneys. When these filters are scarred, they are unable to filter your blood, which can lead to kidney damage and failure. Treatment for FSGS focuses on treating the symptoms and preventing any additional scarring.

FSGS is not caused by a single disease. It can have many different causes. The scarring may happen because of an infection, or drug, or a disease that affects the entire body, like diabetes, HIV infection, sickle cell disease or lupus. FSGS can also be caused by another kidney-related disease that you had before you got FSGS.

FSGS has different types based on the cause. Primary FSGS is a type of FSGS that means the disease happened on its own without a known or obvious cause. Secondary FSGS is caused by another disease or drug, such as HIV or anabolic steroids that some people use to speed up their muscle growth.

Early stages of FSGS may not cause any symptoms. You may only see some signs on your own, while others may be found by your healthcare provider.

Signs and symptoms of FSGS include:

• Swelling in body parts like your legs, ankles and around your eyes (called edema)
• Weight gain due to extra fluid building in your body
• Foamy urine caused by high protein levels in the urine (called proteinuria)
• High fat levels in the blood (high cholesterol)
• Low levels of protein in the blood

FSGS has no cure. The prognosis varies depending on the person. For some people, FSGS goes away on its own without treatment. For others, the disease continues for many years but does not get worse.

In the U.S., approximately 40,000 patients are living with FSGS, and more than 60% of patients do not have a durable response to current FSGS treatments, which usually include steroids, immunosuppressive drugs, diuretics, and a diet change. Because of this, 50% of patients with FSGS will progress to kidney failure.

Blacks are at least four times more likely to get FSGS in comparison with Whites. Much of this disparity can be attributed to genetic variants of the APOL1 gene found only in individuals with recent African ancestry, according to this study. These variants greatly increase rates of FSGS, among other forms of kidney disease.

Here’s how APOL1 is a factor for Blacks with kidney disease: Forty-five percent of Black Americans under 60 years old on dialysis have the APOL1 genotype. The APOL1 genotype is also found in 75% of Black patients with FSGS.

Many people with the high-risk APOL1 genotype do not show any signs or symptoms of FSGS until kidney failure is approaching. Knowing if you have the APOL1 gene variants is the key to unlocking the mystery of kidney disease in people with African and Caribbean ancestry, medical professionals say.

This awareness is needed in the medical community as well, as providers might not know this link exists, and therefore do not test for it. NephCure is an organization that focuses on raising awareness of FSGS in the Black community. It conducts “culture conversations” with Black kidney doctors and has monthly health fairs where doctors and nurses offer support in some of its locations. NephCure also hosts webinars, educational articles, blog posts, support groups, and its Kidney Health Gateway, which connects people to top nephrologists and research.

“If FSGS is caught early, it’s possible to stop or slow the damage and live a regular life,” says Deja Ivy, NephCure’s associate director of community health. “Our work is important because of the low quality of life with dialysis, but we’re showing that you can be aware and active in your kidney health.”

Black participation in clinical trials could also improve outcomes, as research could determine whether or not drugs being tested for FSGS will work equally as well for Blacks with the APOL1 gene. Clinical trial participation is particularly important for those who are newly diagnosed because FSGS is a rapidly progressing form of disease.

The post Why Are Black People More at Risk to Develop FSGS Kidney Disease? appeared first on Black Health Matters.

After all, diabetes is the primary cause of chronic kidney disease, according to the American Kidney Fund. In fact, one in three adults with diabetes—whether type 1 or type 2—may already have CKD. And Blacks with diabetes develop kidney failure more often than Whites.

Anderson, who saw how diabetes and kidney disease had impacted friends and family, prioritized a healthy diet and regular exercise. A 2017 episode of Black-ish even highlighted his character’s bout with type-2 diabetes. Anderson’s advocacy is most pronounced via Get Real About Diabetes, his awareness campaign in partnership with Novo Nordisk.

Chronic kidney disease is a public health crisis in the U.S., and is far more prevalent in Black people than in White people in the United States, according to the National Kidney Foundation. Black people comprise 13% of the American population but account for about 35% of CKD cases, making them four times as likely as White people to develop the disease.

Given the prevalence of chronic kidney disease, it’s not surprising that there are a number of public figures and celebrities who are living with the chronic illness. And these days, many, from Nick Cannon to Stevie Wonder to the rapper Freeway are open to sharing how they manage their kidney-related ailments—in hopes of inspiring others who might be experiencing the same.

In 2012, Nick Cannon shared that he was diagnosed with lupus nephritis, or lupus kidney disease. His symptoms included fatigue and swelling in his knees, which led to a hospitalization. Then, he learned his kidneys had begun to fail.

Lupus is a disease that can affect any organ system and kidney involvement is one of the most serious manifestations of the disease. Blacks get lupus nephritis more often than other lupus patients. Although most do well with proper medication and lifestyle changes, 10-30% will eventually need regular dialysis or a kidney transplant, according to this study.

Cannon has been vocal about living with lupus nephritis, and how eating low-fat, low-sodium, and low-sugar diets and keeping his blood pressure and blood sugar under control can prevent kidney damage.

He’s raised awareness by serving as the national honorary chair of the National Kidney Foundation’s Kidney Walk, which meant promoting events on traditional and social media and even mounting his own fundraising campaign.

Philadelphia rapper Freeway was diagnosed with End Stage Renal Disease (ESRD) in 2015, which resulted in him suffering from kidney failure. “I was running around with three of the leading risk factors for kidney disease, and I was unaware of it,” he told Fox29 in 2020, citing the factors as having hypertension and diabetes, as well as being African-American.

Freeway chronicled the ups and downs of his life through his Instagram account. He was transparent about his time in dialysis, which took four hours a day, three days a week, along with various appointments. In February 2019, Freeway underwent a kidney transplant to save his life and shared updates from his hospital bed as he recovered.

Since then, he has been committed to helping others get and stay healthy. Freeway acts as an ambassador for the National Kidney Foundation to raise awareness of the disease.

NBA hall-of-famer Alonzo Mourning was at the height of his basketball career—he had just won gold in the 2000 Summer Olympics—when he noticed extreme swelling throughout his body and a lack of energy.

A routine physical exam showed abnormalities, and eventually, Mourning received a diagnosis of a rare, protein-spilling kidney disease called focal segmental glomerulosclerosis (FSGS). FSGS occurs more commonly in Blacks than in Whites, and the rate of decline of kidney function is generally more rapid in African Americans.

FSGS caused such complications for Mourning that he required, and received, a kidney transplant in 2003. Less than a year after his operation, the future Hall of Famer made the risky decision to return to the NBA, and eventually won a championship with the Miami Heat in 2006.

Last November, Mourning told The Athletic that he’s at peace with his journey with FSGS—and says he feels great. Every day, he takes the medicine he needs to prevent his body from rejecting his transplanted kidney. He eats right. He exercises.

Through his advocacy and education efforts, Mourning has raised more than $50 million for various programs, according to the International Society of Nephrology. He continues to work tirelessly to help those with kidney disease.

The post Famous Black Celebs With Kidney Disease and How They Manage Their Health appeared first on Black Health Matters.

MS an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and the body. The exact cause of MS is currently unknown, and symptoms can vary from person to person, and from day to day in the same person.

Historically, MS has been thought to primarily affect Whites. But recent studies have shown that Blacks have an increased risk of being diagnosed with MS compared with White, Hispanic, or Asian patients. Studies also have found there are critical differences in Black and White populations with MS in disease severity, response to therapies, and access to specialty care. That’s why Black participation in clinical trials is essential in improving outcomes for those with the disease.

Clinical trials for those with MS have grown rapidly, particularly over the past two decades, shared Dr. Farrah J. Mateen, an associate professor of neurology at Harvard Medical School who practices at Massachusetts General Hospital, in a recent study. As a result, the number of disease modifying therapies has also expanded.

But most clinical research on MS has not included a significant number of Black participants. A 2015 review showed that out of nearly 60,000 published articles about MS, only 113 focused on Blacks. While they represent 13.5% of the US population, Blacks have made up only about 5% of trial participants for MS treatments, according to the National Multiple Sclerosis Society.

The impact of that absence cannot be underestimated. “Because there was relatively low enrollment of Black people in the studies that led to the approval of most of the drug treatments now available for MS, we don’t have a good understanding of whether or not Black people respond differently to these therapies,” says Dr. Mitzi Joi Williams, a neurologist who is passionate about educating and empowering people affected by MS, in her blog post titled “Why You Should Be Participating in Multiple Sclerosis Research.”

She laments the lack of Black participation in these studies, particularly when clinical trials are concentrated in academic, usually urbanized centers where there is highly diverse racial representation.

There is the reality of Blacks not wanting to participate in clinical trials because of historical mistrust. Dr. Williams understands the trepidation, but asserts that things have changed. “Research trial protocols are rigorously reviewed to ensure that human rights are not violated, and that all work done is ethical,” she says in her blog post.

Some Blacks with MS have been vocal about their inclusion in MS research. In a Momentum Magazine article “Black Women With MS Speak Up,” Antoinette Pick-Jones, an attorney who was diagnosed with MS in 2019, says medical professionals had initially asked about lupus, HIV, and sickle cell anemia—not MS. That’s particularly concerning given that MS risk is highest in Black women, based on a study by Kaiser Permanente Southern California.

“When research is done, it would be nice to know if any Black women were included in the study,” continues Pick-Jones. “That way, maybe when a Black woman comes to the doctor, the first thing they’re thinking is not HIV. Maybe they’re thinking MS a little sooner.”

In the meantime, medical professionals continue to find new ways to ensure Black participation in clinical MS trials and other types of research. “As clinicians and researchers, we must be intentional in making sure that the populations we study and research reflect the type of patients that we see,” says Dr. Williams in her blog post. “In order for science to truly progress toward more effective prevention and treatments for diverse communities, we all have to be a part of the solution.”

Interested in participating in a clinical trial? Ask your doctor about research opportunities or check reputable websites of established MS organizations.

• Accelerated Cure Project
• Multiple Sclerosis Association of America
• National Multiple Sclerosis Society

Supported by Sanofi, but not responsible for content. Sanofi has ongoing clinical trials in multiple sclerosis and is committed to designing and conducting clinical trials with clear diversity targets so that trial populations reflect demographics of the disease being studied.  They do this through gaining diverse patient insights into trial design, selecting sites in underserved populations, training investigators, partnering with local communities, patient groups, and organizations, and leveraging technology to expand access. To learn more about their trials, visit Multiple Sclerosis Clinical Research Studies | Sanofi Studies.

This article is brought to you by Sanofi.

The post Why Black Participation in Clinical Trials for Multiple Sclerosis Matters appeared first on Black Health Matters.

Midway through my appointment, my gynecologist went silent. Her face screwed up a little, and she announced, “I don’t hear a heartbeat.”

My own heartbeat stopped, too, for a second, maybe two. “What?” I managed to croak.

She was suddenly all business. What had been a jovial visit—with a joke-filled few minutes discussing the difference between amniocentesis and chorionic villus sampling—turned into quiet desperation.

I don’t remember getting dressed, but moments later I was in my car, driving through rush-hour traffic to a radiology center. Their ultrasound equipment, my doctor explained, was more sophisticated. She hoped she was wrong and that I’d return to her office and yell at her for scaring me.

Understanding a High-Risk Pregnancy
We hear about women getting pregnant after age 40 all the time these days. The miracles of reproductive science are so commonplace they don’t even seem like miracles anymore. Even before the age of test-tube babies and in vitro fertilization, both my grandmothers had their last children in their early 40s. Though my maternal grandmother’s final pregnancy netted twins, I don’t think anybody ever said the words “high risk” to her.

Times have changed. I knew my pregnancy was high risk. I was 43 (nearly 44), I’d already started perimenopause and the whole event was completely unplanned. Throw in a severely tilted uterus (it has caused every gynecologist I’ve ever visited to exclaim, “I’ve never seen such a tilted uterus!”), and forget the wall; the handwriting was on the ceiling.

But if I had any doubts about my pregnancy’s status, they were erased by the bright red, all-caps, 5-inch-tall words stamped across the front of my medical file: “ADVANCED MATERNAL AGE.”

Three months into a new relationship with a newly divorced guy (who said during our second or third conversation that he a) no longer believed in marriage, and 2) didn’t want any more children), and I was knocked up. Preggers. With child. Confused. Bewildered.

But mostly I was thrilled. I started taking prenatal vitamins immediately and eliminated caffeine. I upped my intake of fresh fruits and vegetables. Normally a type-A workaholic and a night owl, I made sure I got the proper rest. I pulled out the list of baby names I’d been compiling since seventh grade. And I began planning how to scale back my 90-hour workweek. I was a week away from the start of my second trimester, a week away from sharing my good news with family and friends.

Then I had the missing heartbeat doctor’s appointment.

Why Miscarriages Happen

After two ultrasounds, the radiology center confirmed my doctor’s diagnosis: There was no heartbeat. (The technician was pretty rough and cold, but that’s another story for another day.) All my early preparation was fruitless; I was no longer having a baby.

I was hardly alone in my misery. Statistics show 1 in 4 pregnancies end in miscarriage, and most, like mine, occur within the first 13 weeks of pregnancy.

The reasons for miscarriage vary, but most of the time the cause cannot be identified. During the first trimester, the most common cause is chromosomal abnormality, meaning something is not correct with the baby’s chromosomes. But other causes can include:

• Hormonal problems or infections
• Improper implantation of the egg into the uterine lining
• Lifestyle (excessive caffeine, drug use, exposure to radiation)
• Maternal health issues (uncontrolled diabetes, thyroid disease, lupus)
• Maternal age
• Maternal trauma

Types of Miscarriage

To many women who have lost a pregnancy, a miscarriage is a miscarriage is a miscarriage, but your health-care provider may use one of the terms below to refer to the type:

• Threatened Miscarriage: Some early pregnancy uterine bleeding accompanied by cramping or lower backache. The cervix remains closed. This bleeding is often the result of implantation.
• Inevitable or Incomplete Miscarriage: Abdominal or back pain accompanied by bleeding with an open cervix. Bleeding and cramps may persist if the miscarriage is not complete.
• Complete Miscarriage: The embryo has emptied out of the uterus. Bleeding should subside quickly, as should any pain or cramping. A completed miscarriage can be confirmed by an ultrasound or by having a surgical curettage (D and C).
• Missed Miscarriage: Embryonic death has occurred but there is no expulsion of the embryo. It is not known why this occurs. Signs of this include a loss of pregnancy symptoms and the absence of the fetal heartbeat on an ultrasound. (This is the type I had.)
• Recurrent Miscarriage: Three or more consecutive first trimester miscarriages.
  Blighted Ovum: A fertilized egg implants into the uterine wall, but fetal development never begins.
• Ectopic Pregnancy: A fertilized egg implants itself in places other than the uterus, most commonly the fallopian tube. Treatment is needed immediately to stop the development of the implanted egg. If not treated right away, this could end in serious complications.
• Molar Pregnancy: A genetic error during fertilization that leads to growth of abnormal tissue within the uterus. Molar pregnancies rarely involve a developing embryo, but often entail the most common symptoms of pregnancy, including a missed period, positive pregnancy test and severe nausea.

If you are pregnant and experience any of the following symptoms, contact your doctor immediately:

• Brown or bright red bleeding with or without cramps
• Mild to severe back pain (usually worse than normal menstrual cramps)
• Sudden decrease in signs of pregnancy
• Tissue with clot-like material passing from the vagina
• True contractions (very painful and happening every five to 20 minutes)
• Weight loss
• White-pink mucus discharge

Miscarriage: The Aftermath

After my miscarriage—which I handled alone and terrified—it took a full year for the emotional effects to hit me. During that year I got the “there wasn’t anything you could’ve done; it probably wasn’t your age; it was probably a chromosome problem” discussion from my doctor. I told a couple of close friends, but only in an off-hand, “don’t ask me any questions” kind of way. (“I had a miscarriage last month. Where are you going for summer vacation?”) I went back to my 90-hour workweeks without missing a beat. Of course, I did. I’m a strong black woman.

A year later I agonized. Was it that glass of wine 48 hours after conception? Perhaps the caffeine in my venti hot chocolate; I was certain I’d had five or six of them before I knew I was pregnant. I was envious of two friends who had been pregnant at the same time (though they didn’t know about my pregnancy), and who both went on to have healthy, beautiful babies. Then I was wracked with guilt over the envy. I cried with cause (mom-related Facebook posts sent me over the edge) and without provocation (the garbage man is late; bring on the tears!).
The relationship with the newly divorced guy died a quiet death, largely because we couldn’t deal with the pregnancy or our shared loss. We had one brief conversation about it that went something like this:

Me: Are we ever going to talk about it?

Him: Why? It self corrected. It wasn’t meant to be.

The handful of folks I let in on my misery squirmed when the “M” word came up. I realized that as a society we’re not comfortable with a pregnancy unfulfilled. There was no memorial service for an 11-week-old embryo. I didn’t get flowers or cards, and because I didn’t want to distress other people, I stopped talking about it. I was alone in my grief.

The American Pregnancy Association suggests women who have lost a baby take the necessary time to grieve, seek counseling and accept help. In my haste to move beyond such a painful and sad time, I tried to rush my emotional healing process. It is only now, more than three years later, that I’m able to comprehend my loss and put things in perspective. When folks ask why I don’t have children in that “don’t you like kids?!” disdainful way—as a new guy I started dating did—I say, “I had a miscarriage when I was 11 weeks pregnant.”

And you know what? I didn’t care one bit that it made him squirmy and uncomfortable.

—Kendra Lee

The post Anatomy of a Miscarriage appeared first on Black Health Matters.

In addition to being a genetic disorder, lupus is also considered a hereditary disease. This means it runs in families, and if you or a member of your family has lupus, there’s a chance that you’re at risk too.

The Lupus Foundation estimates that nearly 1.5 million Americans are living with lupus. Although any race, sex or ethnic group can develop lupus, African American women and women of color in childbearing age are at the highest risk of developing lupus.

In fact, nearly 90% of people living with lupus are women, and for African American women, lupus is more common, and more deadly. A recent study conducted by the Lupus Foundation found that lupus is among the top 10 leading causes of death in Black women ages 15-44.

African American women are affected with lupus three times more than White women, and 1-in-250 African American women will develop a form of lupus in their lifetime.

Today, it is still unknown as to why African American women are more likely to develop lupus and face greater premature death outcomes as a result of lupus complications. However, it is believed that genetics and environmental factors may play a role. More research is needed to address these.

Because African American women are disproportionately affected by lupus, their presence is greatly needed in lupus-related clinical research studies. Clinical trial research studies are scientific studies that are used to determine if an investigational drug or therapy is safe and effective for the general public to use.

By participating in a clinical trial, you are contributing to the future of medicine for yourself and others who have been diagnosed with lupus. In addition, you may have access to the investigational medication before it is approved and made available to the public.

To better understand lupus and increase the safety and efficacy of treatment options in the future, African American women need to be present in clinical trials.

Without the representation of African American women in clinical trials, scientists can’t get the bigger picture of how investigational drugs will affect all of those involved – including African American women who are the most negatively impacted by lupus complications.

Representation matters. Studies have shown that different racial or ethnic groups may respond differently to the same medications. In an interview with the Lupus Foundation of America, Wendy Rodgers, an African American lupus survivor and clinical trial participant states, “It is so important for African American women to participate in clinical trials because the standard of care does not always fit us. We need to be present in these trials because when they design medications, we need to have drugs designed to fit our bodies, [to] respond to our bodies.”

There isn’t a cure for lupus, but currently available treatment options can help alleviate the symptoms and maintain or improve the standard of living for those living with lupus.

Clinical trials are completely voluntary. If you or a loved one have been diagnosed with lupus, visit BMSStudyConnect to find out if you’re eligible for a clinical trial.

The post African American Women are at a Higher Risk of Developing Lupus and Lack Representation in Clinical Research appeared first on Black Health Matters.

The post Lupus Lunch & Learn appeared first on Black Health Matters.

When lupus severely affects the kidneys and causes kidney disease, it is called lupus nephritis. This is an autoimmune disease that causes inflammation of the kidney in patients with SLE. 

Lupus nephritis is a common but serious lupus-related health complication, affecting up to 60% of lupus patients. Blacks, Asian Americans, Pacific Islanders, and Hispanics are all populations at high risk for developing lupus nephritis.

In severe cases, lupus nephritis may cause permanent kidney scarring. Patients with lupus nephritis are at a higher risk of developing certain types of cancer and heart problems. Without adequate treatment, lupus nephritis may result in impaired kidney function, and many patients progress to end stage renal disease requiring dialysis or kidney transplant.

There is no cure for this disease, but treatment can help manage symptoms and prevent disease progression.

If you have been diagnosed with lupus nephritis, consider participating in a clinic trial. Click here to learn more about an ongoing study of an investigational medication.

Is it Lupus Nephritis?

Recognizing lupus nephritis involves understanding the signs and symptoms that indicate kidney involvement. Signs and symptoms may vary. Some symptoms may not be noticeable initially and may take up to 5 years to be recognized. The most common symptoms include:

• Weight gain
• Swelling (usually in the legs, feet, ankles, or around the eyes)
• Urine changes
  • Frequent urination
  • Blood or protein in urine (may only be visible under a microscope)
  • Dark urine
  • Foamy, frothy urine
• High levels of waste (creatinine) in your blood
• High blood pressure

If you are experiencing symptoms or have concerns, your healthcare provider can complete further testing to determine if a lupus nephritis diagnosis is appropriate. 

Join the Research

Early detection is key to being proactive about preventing further kidney damage and ensuring optimal treatment outcomes. Regular checkups and communication with your healthcare provider are equally as important. 

Clinical trials are another way to raise awareness and improve treatment options, as researchers test new possible therapies and gain a deeper understanding of the condition as a whole. Participating in a clinical trial allows you to contribute to the advancement of your own health and the lupus community at large. 

Currently, due to a number of different factors, Black patients are unfortunately underrepresented in clinical trials. Improving representation in medical research is a collective effort that may involve you taking the first step. You may be able to participate in an important new study and potentially avoid further damage to your kidneys. 

Join the search for a better way to protect your kidneys. Learn more here.

– – –

References:

1. NIH – Lupus and Kidney Disease (Lupus Nephritis)
2. Lupus Foundation of America – Lupus Facts and Statistics
3. CDC – Systemic Lupus Erythematosus (SLE)
4. National Kidney Foundation – Lupus and Kidney Disease (Lupus Nephritis)
5. Lupus Foundation of America – What is Lupus Nephritis?
6. American Kidney Fund – Lupus Nephritis: Symptoms, treatment, and complications
7. NIH – The State of Lupus Clinical Trials: Minority Participation Needed
8. National Kidney Foundation – Are Clinical Trials Safe?

The post Lupus Nephritis: Know the Signs and Join the Research appeared first on Black Health Matters.

Lupus can be a debilitating disease. With lupus, the body’s immune system mistakenly attacks healthy tissues and organs. These attacks produce symptoms such as inflammation in the body, rash, hair loss, skin discoloration, swelling, and pain.

Based on the Centers for Disease Control (CDC) data, the Lupus Foundation estimates that there are nearly 16,000 new cases of lupus per year¹. Anyone can develop lupus. However, women between the ages of 15-44 make up 90% of lupus cases¹.

African American women and women of color are the most likely to be diagnosed with some form of lupus¹. For African American women, lupus is more common and starts developing at a younger age². In addition, African American women are more likely to face premature death as a result of lupus complications. Researchers believe that genes, heredity, hormones and environmental factors contribute to the likelihood of an individual developing lupus ¹.

Because African American women are the most likely to be negatively impacted by lupus, more African American women should consider participating in clinical trials. Clinical trials are research studies that involve studying an investigational drug or therapy and ensuring that it is safe and effective for the general public to use.

Although the data shows that African American women are diagnosed with lupus and experience premature death more than other racial groups¹, it doesn’t explain why. More African American women need to be encouraged to participate in clinical trials in order for researchers and healthcare professionals to understand why African American women are more likely to develop lupus, and can then provide better care options for the future.

In a patient interview with the Lupus Foundation, lupus survivor and African American clinical trial participant Wendy Rodgers states, “…when we participate in a clinical trial, we empower ourselves.”

If you have been diagnosed with lupus, you might want to consider participating in a clinical trial.

You’ll also have access to a team of healthcare professionals to get your health-related questions answered. In addition, you will play an important role in the health of yourself and others who are living with lupus.

Without the inclusion of more African American women volunteer participants in clinical trials, what scientists understand about lupus and how it affects African American women is limited. In order for researchers to develop lupus medications that are safe and effective for African Americans, their participation is needed in clinical trials.

Clinical trials also help advance medical knowledge and are necessary for scientists to develop and test new treatment options and investigations drugs for the safety and efficacy of all involved.

When scientists are testing for efficacy and safety in an investigational medication, genetic risk factors matter. Genetic risk factors include an individual’s age, sex, race or ethnicity, and family history¹. This means that race and other genetic factors may influence how a medication works³ in a person’s body and what side effects they may have.

Because African American women experience lupus the most, their presence is necessary in clinical trials to ensure that investigational drugs are safe and effective for them to use.

Clinical trials are completely voluntary. If you or a loved one have been diagnosed with lupus, visit BMSStudyConnect to find out if you’re eligible for a clinical trial.

References:

1 https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed May 7,2021.

2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4198147/. Accessed May 7, 2021.

3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594139/. Accessed May 7, 2021.

The post African American Women and Lupus: The Most Diagnosed and More Likely to Die Prematurely appeared first on Black Health Matters.

The post Black Health Matters Talks FSGS With NephCure’s Lauren Lee appeared first on Black Health Matters.

• Manage electrolyte (salt) concentrations
• Manage the amount of fluid within the body
• Help manage blood pressure xHelp maintain acid-base balance
• Produce hormones that affect blood and bones

• Immune system conditions such as lupus or chronic viral illnesses such as HIV/AIDS, hepatitis B, and hepatitis C.
• Urinary tract infections that have reached the kidneys can lead to scarring as the infection heals. Multiple episodes can lead to kidney damage.
• Inflammation in the tiny filters within the kidneys; this can happen after a strep infection and other conditions of unknown cause.
• A rare kidney disease called focal segmental glomerulosclerosis (FSGS) that disproportionately affects African Americans. It affects the kidney’s filter units which stop filtering the blood properly and protein spills into the urine (called proteinuria). Over time, this may lead to kidney failure.
• Polycystic kidney disease, in which fluid-filled cysts form in the kidneys over time. This is the most common form of inherited kidney disease.
• Congenital defects that affect the kidneys often cause urinary tract obstruction or malformation. One of the most common involves a valve-like mechanism between the bladder and urethra.
• Drugs and toxins, including long-term exposure to some medications and chemicals, such as NSAIDs (nonsteroidal anti-inflammatory drugs), like ibuprofen and naproxen, and use of intravenous “street” drugs.

The post The Truth About Chronic Kidney Disease appeared first on Black Health Matters.

Each kidney is made up of approximately one million tiny filters called glomeruli. Much as a coffee filter keeps coffee grounds in, glomeruli filter the blood, taking out the water-like part, which becomes urine and leaving the protein in the blood. When glomeruli become damaged or scarred (sclerosis), proteins begin leaking into the urine (proteinuria). The word “focal” is added because in FSGS, only some of the glomeruli filters become scarred. “Segmental” means that only some sections of the glomerulus becomes scarred, just parts of them.

How is FSGS diagnosed?

FSGS is diagnosed with renal biopsy, however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

• Proteinuria caused by large amounts of protein spilling into the urine
• Edema, which is swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen, which causes sudden weight gain.
• Low blood albumin levels because the kidneys are removing albumin instead of returning it to the blood
• High cholesterol in some cases
• High blood pressure in some cases and it often can be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles, and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.

What causes FSGS?

FSGS is usually idiopathic, which means it arises without a known cause. There are some known genetic causes of the disease, with new gene variants continually being discovered.

FSGS can be primary or secondary in nature.

Primary FSGS means the disease happened on its own without a known or obvious reason.

Secondary FSGS means doctors think it was caused by, or is associated with, another medical condition that occurred first. How the other condition caused the scarring is not always certain. Some causes of secondary FSGS include:

• Kidney defects from birth
• Urine backing up into kidneys
• Obesity
• Obstructive sleep apnea
• Viruses and blood disorders (such as HIV and sickle cell anemia)
• Autoimmune disorders (such as lupus and HSP)

Who gets FSGS?

More than 5,400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

• a limited number of biopsies are performed
• the number of cases are rising more than any other cause of nephrotic syndrome.

FSGS occurs more frequently in adults than in children and is most prevalent in adults 45 years or older. It is most common in African Americans and people of Asian decent.

How is it treated?

Currently there are few FDA approved treatments, but usually a steroid called prednisone or prednisolone is given to try and control proteinuria. Proteinuria treatment aims to decrease the amount of protein lost in the urine. The less protein in the urine, the better the patient will do. In FSGS, even partial remission is important.

Your nephrologist may also recommend:

• Medications that suppress your immune system
• Diuretics and a low-salt diet help to control edema
• A medication that blocks a hormone system called the renin angiotensin system (ACE inhibitor or ARB) to control blood pressure or lower urine protein
• Anticoagulants to prevent blood clots
• Statins to lower the cholesterol level
• Maintaining a healthy diet—correct amounts of protein and fluid intake according to your nephrologist’s recommendations. A healthy diet consists of low salt with emphasis on fruits and vegetables, low in saturated fat and cholesterol. A low-salt diet may help with swelling
• Exercising
• Not smoking
• Vitamins

From NephCure Kidney International

To see if a clinical trial is for you, visit https://www.fsgsduplex.com.

The post What Is FSGS? appeared first on Black Health Matters.

Last week, Rep. Ayanna Pressley did an incredibly brave thing: She revealed to the world her battle with alopecia.

In an exclusive video for The Root, the freshman Democrat told the world that she has alopecia and showed off her beautiful bald head.

“In the fall, when I was getting my hair retwisted, is the first time that I was made aware that I had some patches,” Pressley said. “From there, it accelerated very quickly and got to the point” where she was “waking up every morning to sinkfuls of hair.”

“Every night I was employing all the tools that I had been schooled and trained in throughout my life as a black woman because I thought that I could stop this. I wrapped my hair. I wore a bonnet. I slept on a silk pillowcase,” she added.

“And yet and still every morning, which I faced with dread, I did not want to go to sleep because I did not want the morning to come where I would remove this bonnet and my wrap and be met with more hair in the sink and an image in the mirror of a person who increasingly felt like a stranger to me.”

I am awe of Pressley and am inspired by her courage.

But it’s important to point out that Rep. Pressley is not alone in this fight. It’s estimated that 40 percent of women over the age of 40 suffer from hair loss.

Here are five facts that every black woman needs to know:

1. Alopecia areata is an autoimmune disorder. One form of alopecia is alopecia areata, which is classified as an autoimmune disorder that attacks the hair follicles. This causes one’s hair to come out, often in clumps the size and shape of a quarter, according to WebMD. Folks with this disorder can have hair that falls out in patches or they can lose a lot of hair.

Alopecia areata is occasionally associated with other autoimmune conditions, such as thyroid disease, vitiligo, lupus, rheumatoid arthritis and ulcerative colitis, MedicineNet.com reported.

It’s unknown if this is the type of alopecia Jada Pinkett-Smith, who also recently revealed she’s suffering from hair loss, has. CNN noted the tests she took have yet to uncover a medical explanation for her hair loss. However, some of her friends believe her condition is due to stress.

2. Traction alopecia is more common among black women. Traction alopecia is the most common form of alopecia that affects black women. This type of hair loss is a result of the tension from our styles such as weaves, braids, extensions and wigs. It happens when the follicle is inflamed from the hair being pulled too tightly for too long. This hair loss can occur anywhere on the scalp, but we see it a lot on a woman’s hairline, the kitchen and from the front to behind our ears.

One important thing to keep in mind: Traction alopecia doesn’t happen overnight. As the New York Times pointed out, it comes in stages starting with pain and little bumps around the follicles,  gradual thinning and then scarring causing permanent hair loss in that area.

Growing your hair back isn’t going to happen overnight either. Allure noted it can take three month to nine months to see any progress with treatment, which can include steroid shots, follicle serums, vitamins and growth cremes like Rogaine. So just be patient.

3. Loosen those braids, weaves and relaxers. In some cases, alopecia can be genetic, but for many black women, traction caused by how we style our hair seems to be a huge cause. So one way to prevent or alleviate hair loss can include the following:

• Make sure your braids aren’t so tight, especially around the hairline. Don’t be afraid to let the braider know you’re uncomfortable.
• If you can, stretch out your relaxers a bit or relax the areas where there is hair loss less often than the rest of your scalp.
• Keep in mind your protective style may not be protecting your hair. So pay attention.
• Work with your stylist on a hairdo that won’t make your hair loss worse.

4. Don’t forget about folliculitis-induced alopecia. This type of alopecia occurs when bacteria seeps down into the scalp, causing inflammation of the hair follicles. According to Live Strong, there are different forms of folliculitis, including non-infectious and infectious. It’s believed that non-infectious forms are caused by greases and oils that are applied to the scalp and clog the hair follicles. Treatment can include antibiotics and topical creams.

5. Early detection is best, so go to the dermatologist. Once the follicle is scarred, the damage is not reversible, so please make an appointment with a dermatologist or doctor as soon as you can. From there, they will diagnose the type of alopecia you have, ascertain the best course of treatment and, if possible, reverse any hair loss you’ve already suffered.

Remember, you don’t have to suffer in silence. Just be as proactive as you can.

—Kellee Terrell

From Hello Beautiful

The post 5 Things We Should Know About Alopecia appeared first on Black Health Matters.

Lupus, a chronic autoimmune disease, often leaves those affected with inflammation and pain throughout the body.

“Rheumatic diseases, such as lupus, are a leading cause of chronic pain,” says Emily Somers, an associate professor of rheumatology, environmental health sciences and obstetrics and gynecology at Michigan Medicine.

Somers is the lead author on a new study, published in the Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report, that examined prescription opioid use among adult patients with lupus in southeast Michigan.

“With the current opioid epidemic and evolving guidance related to opioid prescribing, we wanted to determine current levels of prescription opioid use in lupus,” says Somers.

The research team examined data from the Michigan Lupus Epidemiology & Surveillance Program, a cohort of more than 650 patients with and without lupus from southeast Michigan.

In the study of patients who shared a similar demographic background—462 adults with lupus and 192 adults without lupus—31 percent of patients with lupus were using prescription opioids during the study period compared to 8 percent of adults without the condition.

In addition, 68 percent of the patients with lupus using prescription opioids were using them for more than one year, and 22 percent were on two or more different opioid prescriptions.

“These findings were alarming because one in three patients with lupus were using a prescription opioid, with the majority of those for longer than a year, even though opioids may not be providing benefits and have harmful side effects,” Somers says.

“We were surprised to find such high-levels of prescription opioid use amongst patients with lupus and that they were over three times as likely to use prescription opioids than others in their community with similar sociodemographic backgrounds.”

The study also found that patients with lupus who had at least one emergency department visit in the last year were twice as likely to use prescription opioids compared to those patients with lupus who had not visited the emergency department.

“It is important for clinicians caring for patients with lupus, including providers in the emergency department, to be aware of the high levels of prescription opioid use in lupus,” Somers says.

She adds that patients with lupus may be particularly vulnerable to long-term side effects of opioids.

“In addition to their underlying disease, patients with lupus generally receive immunosuppressive and glucocorticoid therapies, which already put patients at a higher risk for known adverse effects related to long-term opioid use,” Somers says.

Somers notes that there can be several causes of pain in lupus, including a high prevalence of centralized pain, or fibromyalgia, among people living with lupus. The source of pain therefore needs to be diagnosed accurately in order to treat patients with lupus properly.

“Underused, but effective, non-opioid and non-drug strategies for pain management, as well as treatment directed at possible coexisting centralized pain syndromes, may be both safer and more effective than long-term opioids for reducing pain in this patient population,” Somers says.

“Examples of non-drug pain management include physical activity and self-management education about the patient’s chronic disease.”

Somers and the research team hope this study inspires fellow health professionals to work towards strategies for reducing opioid use in patients with lupus, along with safer and more effective pain management.

“This level of opioid use signals a need for healthcare providers to consider effective non-opioid pain management strategies in these patients and to familiarize themselves with guidelines for opioid tapering and discontinuation when appropriate,” Somers says.

The post Nearly 1 in 3 Lupus Patients Use Opioids appeared first on Black Health Matters.

Black Health Matters and Communities of Harlem Health Revival have formed an important alliance to discuss the option of research studies for people diagnosed with lupus SLE (systemicLupuserythematosus).  Lupus SLE discriminates against African American women affecting 1 in every 537. This disease puts them at risk for life threatening complications such as neurologic or kidney disease and end-stage renal disease.  Sadly, many of these women are less likely to have the support needed to battle this autoimmune disease either physically oremotionally.

The Communities of Harlem Health Revival (CHHR) and Black Health Matters’ (BHM) Lupus and Research Study Awareness Dinner Program was convened on August 23rd from 6:00 -9:00 pm at Londel’s restaurant in Harlem, NY.  Black Health Matters received the support of leading churches under the CHHR umbrella for this initiative.  Communities of Harlem Health Revival was founded in 2006 to motivate Harlem residents to adopt a healthy lifestyle by providing tools and information that empower community residents to advocate for themselves  and learn more ways to take better care of their health.  The goal is to bring the holistic message of body, mind, and spirit intopractice.

Led entirely by volunteers, the health ministries of many prominent churches in Harlem were open to learning about lupus and the options that participation in a research study offers.  Together with CHHR, Black Health Matters was able to gain traction about its mission of empowering women with lupus.

The response to the call-to-action was overwhelming! The Lupus and Research Dinner Awareness Program was originally planned for 30 attendees.  The final attendance was closer to 60 – 98% of whom were female!

A Full House
Attendees hailed from churches across Harlem.   This included the executive Health Ministry leadership from Riverside Church, Ephesus Seventh Day Adventist Church, Canaan Baptist Church, Convent Baptist Church, Abyssinian Church, and St. Charles Church to name a few. Additionally, nurses from the New YorkBlack Nurses Association participated as well as Dr. Shelton Fields, the President of the New York Chapter of the National Black Nurses Association.  Other highlighted attendees included: the Rev. Debra Northern, Parish Minister Riverside Church and the Rev. Dr. Lisa D. Rhodes, Union Theological Seminary. Dr. Rhodes is the Executive Director of the RISE Together Mentorship Network, a soon-to-be-launched national mentorship initiative for women of color in ministry.  Lastly, there were three board members/founders of CHHR in attendance which included Joanne Thigpen of Abyssinian Baptist Church.

Roslyn Daniels, president and founder of Black Health Matters opened the   program by recognizing the health ministries in attendance and outlining the purpose of this dinner program.  Following her was a member of CHHR and community advocate, Doris Rhem, who shared her passion for community service. She gave a strong presentation with a plea that more African Americans consider research study participation.  Roslyn Daniels followed up with an overview of the different phases of a research studies and how physicians have a responsibility to make recommendations for patient participation.   She stressed that the dinner could be a national model for advocacy for African American communities.

Adrienne Nicole, a lupus patient and advocate followed her with her own personal testimony on living with lupus.  She shared her personal journey of diagnosis and why research study participation is imperative.  Adrienne works with the Lupus Research Alliance in various capacities.  Angela Rochelle, of Continuum Clinical spoke about the importance of research studies and thanked her client Bristol-Myers Squibb for embracing diversity in supporting programslikethis.  She also shared that clinical research could lead to more options for those that bear the burden of living with lupus.

The dinner program closed by highlighting a Lunch & Learn series of smaller discussion groups that will be held at 4 prominent churches in Harlem in October and November.These Lunch & Learn sessions will provide an environment where specific medical questions about research studies could be addressed. The free informational Lunch & Learn sessions will be held at: Canaan Baptist Church, October 28th, 2018; Ephesus Seventh-day Adventist Church, November 3rd, 2018; Abyssinian BaptistChurch

on Sunday, November 4th; and at Convent Avenue Baptist Church, on Saturday, November 10th, 2018.  The Lunch & Learns will feature lupus advocate and patient, Adrienne Nicole, an Emmy-nominated producer, writer, and director who has worked for media organizations such as BET, TVOne, and Essence. These sessions are expressly for people living with lupus and their loved ones who want to explore options relating to researchstudies.

For additional information on lupus see: www.blackhealthmatters.com/lupus

The post BHM and CHHR Partner to Raise Awareness of Lupus & Research Studies appeared first on Black Health Matters.

The post Lupus Events appeared first on Black Health Matters.

Mane Choice Healthy Hair products offer a comprehensive methodology to achieving beautiful healthy hair, by infusing our hair care products with vitamins and essential nutrients such as Biotin, Vitamin A, B, C, D, & E and more.
Manetabolism Plus A daily, complete dietary supplement formulated to help hair grow longer, thicker, faster and healthier.
Multi-Vitamin Scalp Nourishing Growth Oil is a natural oil blend made exclusively for the scalp. Formulated to help revitalize and rejuvenate, our revitalizing oil is powerful, yet gentle enough to be used daily or as often as needed to transform your hair into a much healthier, longer and thicker state.
Easy On The CURLS Detangling Hydration Shampoo & Conditioner Infused with Biotin and Vitamin E to nourish, grow and hydrate your hair, Easy On The CURLS leaves the hair feeling soft and shiny, while eliminating the dry and stripped feeling. A clean scalp and clean hair is essential to the perfect healthy hair growth regimen.
Soft As Can Be An advanced conditioner that can be used as a Co-Wash, Leave-In, and Detangler. Adds shine, softness and manageability. Stops breakage during the detangling process. Leaves the hair softer and improves elasticity.
Green Tea & Carrot Deep Strengthening & Restore Mask Treatment Formulated to penetrate the hair shaft and infuse your hair with high-quality vitamins and nutrients to transform your hair into its most optimal and healthiest state. Enriched with biotin, green tea, and carrot oil, this product will immediately begin to repair and restore dry and damaged strands.

CAROLS DAUGHTER – MONOI INTENSE REPAIR SET  www.carolsdaughter.com

This powerful set nourishes, deep conditions and ends splits, snaps and breakage—instantly. This super-repairing set is everything you need to grow beautiful, healthy and flawless hair—fast.
The Monoi Repairing Sulfate-Free Shampoo helps detangle damaged hair that’s prone to tangling while it adds strength back into fried, fragile strands.
The Monoi Repairing Conditioner goes straight to work, healing hair to leave it stronger than before so you’ll notice fewer snaps and breaks, plus hair that’s softer and full of shine.
The Monoi Repairing Anti-Breakage Spray has double the fortifying power, and it instantly ends shedding, eases detangling, and protects hair around-the-clock.
The Monoi Repairing Split End Sealer is a repairing lotion that binds the separated and frayed ends of your hair together, so you can skip the trim and keep your length.
 
EDEN’S BODY WORKS- ALMOND MARSHMALLOW TREAT, REPAIR, SEAL KIT
www.edenbodyworks.com

This treatment trio collection is formulated with sweet almond oil and marshmallow root extract to treat, repair, seal damaged hair and soften strands.
The Almond Marshmallow Hydration Serum Smooth out frayed hair and split ends. Nourishes dry, brittle hair. Use to protect hair against daily pollutants and heat damage.
The Almond Marshmallow Split End Repair Masque Works in minutes to transform hair and prevent additional damage. Use weekly to strengthen hair (lessen breakage) and experience fewer split ends.
The Almond Marshmallow Therapy Leave in Conditioner Drive away damage and see instant improvement in split ends, with long term benefits. Safe for color-treated, chemically treated, and natural hair.

Have you tried any of these products? How do they work on your hair?

The post Lupus & Natural Hair appeared first on Black Health Matters.

Walk to End Lupus Now Event, April 21, 2018, Atlanta, Georgia

African Americans struggle with high rates of chronic diseases that are often overlooked in mainstream media. Black Health Matters the premier platform on African American health will focus its attention on Lupus in April, 2018. This will culminate with participation in the Walk to End Lupus Now event on April 21^st in Atlanta, GA.
According to the Lupus Research Foundation, systemic lupus erythematosus (SLE) is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue. It can affect virtually any part of the body including the skin, joints, kidneys, brain, and other organs.  The underlying cause of autoimmune diseases is not fully known. Lupus is two to three times more prevalent among women of color—African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders—than among Caucasian women. Recent research indicates that lupus affects 1 in 537 young African American women. It is reported that African American lupus patients are more likely to have organ system involvement, more active disease, and lower levels of social support compared with white lupus patients.
Black Health Matters (BHM) contributor and lupus advocate, Gabrielle Davis will join Black Health Matters on-site at the Walk to End Lupus Now.  Gabrielle Davis is a former news journalist, turned lupus/patient advocate who uses her candid experiences of living with lupus, chronic illness and an invisible disease to spread awareness, particularly among underserved populations and those who make decisions that directly impact underserved populations. Diagnosed in 2009 as a 26-year-old newlywed, Gabrielle began her social media presence under Lupus Sistas to connect, educate and support the lupus community. Since then she works to provide lupus education and awareness in her local community, legislatively and for the medical community.
BHM has reported on Davis and her outstanding work to educate about lupus and the imperative of clinical trial participation.  See:  https://blackhealthmatters.com/summit/ and https://blackhealthmatters.com/health-conditions-hub/lupus/lupus-is-an-urgent-matter/
Roslyn Daniels, president and founder of Black Health Matters will also attend the Walk to End Lupus Now.  Daniels states, “The goal is to report on the passion and spirit of lupus warriors as they press for a cure.  We at Black Health Matters believe that advocacy and participation in clinical trials will lead to a cure.”
 Visit the Black Health Matters team in Victory Plaza, at the Atlanta Walk to End Lupus Now to increase awareness of lupus and rally public support for those who suffer from its brutal impact.

About Black Health Matters
Black Health Matters, (www.blackhealthmatters.com) is a digital health communications and patient event engagement firm that was founded in 2012.    Black Health Matters (BHM) is an award-winning, premier web site that empowers thousands each week with information on the management of chronic disease. We deliver a highly personalized content experience that makes healthy behaviors relevant within the context of their lives.  Our  Black Health Matters Summit which brings world-class medical doctors into communities to dialogue on health strategies.

About Gabrielle Davis
Gabrielle Davis advocacy work in raising awareness of lupus includes:

• Feature by the US Department and Health and Human Services’ Office on Women’s Health to highlight Lupus.
• Board Member – Lupus Foundation of Florida
• WEGO Health Patient Expert
• 2016 WEGO Health Activist Hero Nominee
• 2017 Lupus Research Alliance Patient Advocate for Annual Advocacy and Hill Day in Washington D.C.
• Featured in a lupus awareness segment for Lifetime Television’s show “The Balancing Act” November 2017
• Education Session on Lupus for 2017 Black Nurses Rock Annual National Convention in Orlando, Fla.

The post Black Health Matters Joins The Walk To End Lupus in Atlanta, GA appeared first on Black Health Matters.

For people with compromised immune systems, getting vaccinated often involves complex decisions. A vaccine provides important protection to prevent illness, but when your system is weakened by conditions such as HIV or rheumatoid arthritis, does getting a vaccine also come with added risks? Before making that decision, talk to your doctor. And consider these things:

• What makes someone “immunocompromised”? Your immune system can be compromised in different ways. One example is an immunodeficiency, such as HIV. But other common autoimmune inflammatory diseases can weaken your immune system, too, including rheumatoid arthritis, Crohn’s disease, lupus and psoriasis. Medications also can play a part. Biologic drugs used to treat rheumatoid arthritis and similar conditions are designed to stop the immune system from malfunctioning.
• Which vaccines are risky? “Live” vaccines, including FluMist; those for shingles; measles, mumps and rubella (MMR) and yellow fever carry the biggest risk for immunocompromised patients. In people who aren’t immunocompromised, live vaccines gently poke the immune system, creating antibodies. But in someone with a compromised system, a live vaccine might lead to illness because of underlying problems with the immune system response—even, in some cases, causing the very disease it’s trying to protect against. If a patient’s disease might progress to the point of requiring biologic drugs in a few years, he or she might want to get vaccinated sooner rather than later.
• Are vaccines always on the no-fly list? Not necessarily. If you’re taking a biologic drug, for instance, current thinking says the shingles vaccine is off limits. But some studies suggest the vaccine may be safe for patients taking these drugs. Current clinical trial are underway to confirm whether that’s the case. This trial is evaluating the shingles vaccine in about 1,000 patients who are taking biologics. Final data from the trial is expected to be ready this fall. The bottom line: If you have a compromised immune system, talk to your medical team about risks and benefits specific to your condition. You and the team can then weigh your options.

The post Can You Get Vaccinated If Your Immune System Is Compromised? appeared first on Black Health Matters.

Osteoporosis is a condition in which the bones become less dense and more likely to fracture. Fractures from osteoporosis can result in significant pain and disability. More than 53 million people in this country already have osteoporosis or are at high risk due to low bone mass.

Risk factors for developing osteoporosis include:

• thinness or small frame
• family history of the disease
• being postmenopausal and particularly having had early menopause
• abnormal absence of menstrual periods (amenorrhea)
• prolonged use of certain medications, such as those used to treat lupus, asthma, thyroid deficiencies or seizures
• low calcium intake
• lack of physical activity
• smoking
• excessive alcohol intake

Osteoporosis can be prevented. It is known as a silent disease because, if undetected, bone loss can progress for many years without symptoms until a fracture occurs. Osteoporosis has been called a childhood disease with old age consequences because building healthy bones in youth helps prevent osteoporosis and fractures later in life. However, it is never too late to adopt new habits for healthy bones.

Women who have been treated for breast cancer may be at increased risk for osteoporosis and fracture for several reasons: 1) Estrogen has a protective effect on bone, and reduced levels of the hormone trigger bone loss. Because of chemotherapy or surgery, many breast cancer survivors experience a loss of ovarian function and, consequently, a drop in estrogen levels. Women who were premenopausal before their cancer treatment tend to go through menopause earlier than those who have not had breast cancer; 2) studies suggest chemotherapy may have a direct negative effect on bone health; and 3) breast cancer itself may stimulate the production of osteoclasts, the cells that break down bone.

Several strategies can reduce the risk for osteoporosis or lessen the effects of the disease in women who have already been diagnosed.

Nutrition: Some studies have found a link between diet and breast cancer. However, it is not yet clear which foods or supplements may play a role in reducing breast cancer risk. As far as bone health is concerned, a well-balanced diet rich in calcium and vitamin D is important. Good sources of calcium include low-fat dairy products; dark green, leafy vegetables and calcium-fortified foods and beverages. Supplements can help ensure the calcium requirement is met each day, especially in people with a milk allergy. The Institute of Medicine recommends a daily calcium intake of 1,000 milligrams for men and women up to age 50. Women older than age 50 and men older than age 70 should increase their intake to 1,200 milligrams a day.

Also note that vitamin D plays an important role in calcium absorption and bone health. Food sources of vitamin D include egg yolks, saltwater fish and liver. Many people, especially those who are older or housebound, may need vitamin D supplements to achieve the recommended intake of 600 to 800 IU each day.

Exercise: Like muscle, bone is living tissue that responds to exercise by becoming stronger. The best activity for your bones is weight-bearing exercise that forces you to work against gravity. Some examples include walking, climbing stairs, weight training and dancing. Regular exercise, such as walking, may help prevent bone loss and will provide many other health benefits. Recent research suggests exercise also may reduce breast cancer risk in younger women.

Healthy lifestyle: Smoking is bad for every part of your body, including your bones. Women who smoke tend to go through menopause earlier, resulting in earlier reduction in levels of the bone-preserving hormone estrogen and triggering earlier bone loss. Smokers also may absorb less calcium from their diets. Some studies have found a slightly higher risk of breast cancer in women who drink alcohol, and evidence suggests alcohol can have a negative effect on bone health. Those who drink heavily are more prone to bone loss and fracture, because of both poor nutrition and an increased risk of falling.

Bone density test: A bone mineral density (BMD) test measures bone density in various parts of the body. This safe and painless test can detect osteoporosis before a fracture occurs and can predict the chances of fractures in the future. The BMD test can help determine whether medication should be considered. A woman recovering from breast cancer should ask her doctor whether she might be a candidate for this test.

Medication: There is no cure for osteoporosis. However, several medications are available to prevent and treat this disease. Bisphosphonates, a class of osteoporosis treatment medications, are being studied and have demonstrated some success in their ability to treat breast cancers that have spread to bone.

Another osteoporosis treatment medication, raloxifene, is currently being evaluated for its ability to decrease breast cancer risk. The National Institutes of Health is currently sponsoring the Study of Tamoxifen and Raloxifene, known by the acronym STAR, which compares the effectiveness of raloxifene with that of tamoxifen in preventing breast cancer in postmenopausal women who have a high risk of developing the disease.

The post Breast Cancer and Bone Health appeared first on Black Health Matters.

• Systemic lupus erythematosus is the most common form of the disease, and it involves the entire body.
• Cutaneous lupus causes a rash and lesions on the skin.
• Drug-induced lupus, which occurs when a doctor prescribes a medicine that causes lupus symptoms, usually goes away when the medication is stopped.

Davis was diagnosed with SLE. “It was a devastating diagnosis,” she reveals. “And one I didn’t take as seriously as I should.”
She takes prednisone, which has given her a moon face. She also suffers from joint problems, especially if it’s really cold or damp and humid. She jokes about buying stock in Aspercreme. And she has experienced hair loss.
The fatigue that marks the disease has most severely cramped her lifestyle. “It’s the symptom that bothers us the most,” she says. “It stops us dead in our tracks. There were times it was truly a stretch to get up off the couch.”
But perhaps her biggest lupus challenge came about a year after her initial diagnosis. “In 2010, I was diagnosed with kidney disease,” she says. At first she was able to manage the additional health threat, but by 2016, her kidney function had dipped to 4 percent. Her doctors said it was time to think about dialysis.
She wanted to handle the new diagnosis with exercise and diet. “I said, ‘Let me get my green smoothie on,’ but sometimes we have to take the medicine, and my medicine was dialysis,” she says.
Davis pulls up her shirt to reveal her catheter. “I do nine hours of dialysis with my boyfriend, Baxter,” she says jokingly. Then, serious, again, she adds: “This is my lifeline now.”
Davis’ mission isn’t only to share her own story, though her real-world examples of how lupus has affected her are an engaging way to grab an audience’s attention. “I’m just one of many people living with lupus today. I’m able to hold down a full-time job still. Some can’t,” she says.
Her bigger goal is to spread lupus awareness.
And so she shares these facts:

• Nine out of 10 lupus patients are women.
• 40 percent to 50 percent of sufferers will have organ involvement.
• 1.5 million people in the United States are living with this disease. But that’s a conservative estimate, she explains. “Lupus isn’t tracked well and doesn’t appear on your death certificate.”
• Black women are two to three times more likely to be diagnosed than white women; men are diagnosed less often, but they tend to have more severe symptoms.

Celebrities with lupus—Davis cites Toni Braxton, Nick Cannon, Selena Gomez and Lady Gaga—are doing their part, alongside organizations like the Lupus Foundation of America and the Lupus Research Alliance.
But it’s not enough.
“We are the foot soldiers spreading awareness about this disease,” Davis says, “asking for funding and more research.
“The black community has been speaking up more lately. Now it’s time to make a difference in our health. Advocacy starts with health.”
With that in mind, what can you do? Davis offers these tips:

• Educate yourself. Know the symptoms, which include malar rash, raised red patches, photosensitivity, mouth or nose ulcers, arthritis in two or more joints, inflammation, seizures and psychosis, kidney problems and blood disorders.
• Ask for a full blood workup. Your doctor should look for antibodies to double-stranded DNDA and antinuclear antibodies.
• Be a myth buster. “Lupus is not contagious,” Davis says. “And it’s not HIV.”
• Get involved in clinical trials. “I understand America has a past about testing and medication. I know about Tuskegee,” she says, “but we can no longer say we need a cure to a disease and we’re not a part of the research. We to be a part of the trials. Reach out to lupus organizations in your community and ask what you can do. Doing the most you can in your own circle is the most you can do.”
• Be informed. Even if you don’t have the disease, chances are you know someone who does. Learn how to support the people in your life who have lupus.

The post Lupus Is an Urgent Matter appeared first on Black Health Matters.

Lupus, the autoimmune disease that causes joint and organ damage, kills more Native Americans and blacks than other racial and ethnic groups, a new study finds. Asian and Hispanic lupus patients have the lowest death rates.

“While previous research has examined racial differences among lupus patients, the studies have primarily been based at academic research centers,” said study author Jose Gomez-Puerta, M.D., of Brigham and Women’s Hospital in Boston. “Our study investigates the variation in death rates due to lupus among different ethnic groups in a general clinical setting.”

Researchers analyzed Medicaid claims for more than 42,200 lupus patients, aged 18 to 65, between 2000 and 2006. Nearly 8,200 of those patients had kidney inflammation (lupus nephritis) caused by the disease. By race and ethnicity, the percentages of patients with lupus or lupus nephritis were: black, 40 percent; white, 38 percent; Hispanic, 15 percent; Asian, 5 percent; and Native American, 2 percent. But the study found the annual death rate was highest among Native Americans, blacks and whites, in that order. Hispanic and Asian lupus patients had the lowest death rates.

“In less than three years of follow-up of Medicaid patients with lupus, we found a great disparity in mortality rates among ethnic groups,” Dr. Gomez-Puerta said. “Understanding the variation of death among the races is important to determine how best to treat individual patients, modify risk factors and ultimately improve survival for those with lupus.”

The post Lupus Death Rates Highest Among Native Americans and Blacks appeared first on Black Health Matters.

Gabrielle Davis, a former journalist, found out she had lupus in 2009. She says her diagnosis turned her world upside down, and it took her a few years to feel like her pre-lupus self. Below, Davis, now a lupus activist, talks about her diagnosis, how it changed the way she thinks about herself and what she wants others to know about the disease.

Q: How long have you been living with lupus? And how were you diagnosed?

A: In February 2009 I experienced severe lupus symptoms for the first time. I had shooting pain, fatigue and inflammation [swelling] so bad that it was nearly impossible to walk. The doctors were so alarmed by my high white blood cell count that I was admitted to the ER on Valentine’s Day, when I was supposed to be celebrating with my new husband. I was in the hospital for four days. After a lot of tests, there still wasn’t a conclusive diagnosis. I didn’t learn that my symptoms were being caused by an autoimmune disease until I went to see my primary care physician.

In July 2009, I went through another round of testing with my rheumatologist, a doctor who specializes in the diseases of joints and muscles. That’s when I was formally diagnosed with SLE [systemic lupus erythematosus]. It’s the most common type of lupus. Looking back at my time in college, I was always tired. It was more than your average busy college student tired, but I didn’t know that at the time. I realize now I could have been exhibiting signs of lupus then.

Not too long after my diagnosis, my nephrologist found that lupus affected my renal system. It scarred my kidneys. They don’t work as well as they should now. In March 2013, I was told that I would need a kidney transplant in the future. It was a major blow for me and my husband. For now, my kidneys function well enough for me to live without dialysis or a kidney transplant. It’s a blessing.

Q: What symptoms do you experience now, and how do you manage them?

A: Having lupus affect my kidneys is dangerous medically, but there aren’t any physical symptoms of the kidney damage right now. It’s the debilitating fatigue that makes it rough to balance a career, being married and attend to additional commitments. I manage it by eating well most of the time and exercising regularly. But when it stops me in my tracks, I practice good self-care and I rest. I call in sick from work or cancel my plans for the day.

Q: Has lupus changed the way you think about yourself?

A: The beginning of my journey with lupus was really tough. I was 28, a go-getter by nature and newly married. My lupus diagnosis knocked me off my feet. I was tired and nauseous a lot. I can laugh about it now, but I used pain-relieving creams regularly to ease my inflammation. I felt like a young woman in an old woman’s body.

No one really thinks they’ll experience the “in sickness and in health” part of their vows so early in their marriage, but my husband and I did. I didn’t look like myself. The steroids caused weight gain and I developed the dreaded “moon face.” This happens when the medicines make your face puff up. It’s something all lupus patients know and hate.

I had waist-long dreadlocks I had to cut off because they were falling out. One time I found fallen dreadlocks on my apartment steps. I didn’t recognize myself physically or mentally. I had essentially checked out.

I felt horrible that my new husband had to walk that road with me. Honestly, it took a few years for the pre-lupus Gabrielle to show up again. It took ongoing love and support from my husband, counseling and encouragement from friends and family. We’re still navigating a road neither of us signed up for. We also want to start a family. But with my kidneys in the shape they’re in, we have to postpone and carefully plan what we’re going to do.

Now, I can honestly say that lupus brought out a fire in me that I never knew existed. I’ve always been one to persevere, but having to fight a disease took it to another level. There’s a saying, “You don’t know how strong you are until being strong is the only choice you have.” My faith in God and the determination to carry on has gotten me here. I’m able to exercise up to four times a week, and I’m in better shape than I’ve been in my entire life. I’ve also gained a new perspective. I’ve learned not to sweat the small stuff as much. I don’t wish lupus on anyone. It’s a hard disease to navigate, but I can’t say I’d be as physically or mentally healthy if I wasn’t faced with beating this disease every day.

Q: The holidays can be a tiring and stressful time of year. What can women with lupus do to ensure they continue to prioritize self-care?

A: These are my best pieces of advice:

Schedule time to rest in the midst of the madness. Whether it’s taking a nap or enjoying the silence, do whatever you need to do to relax. And let your family and friends know that you need this time. Don’t try to be Superwoman. That’s not helpful for you or them.
Communicate with family and friends. Let them know that you need time to slow down and rest. They aren’t mind readers. You have to communicate your needs.
Delegate, delegate, delegate. You don’t have to do it all. Pacing yourself and splitting up holiday duties is a win-win for everyone. Can someone else host the family this year? Can someone else go to the store or bake the pies? How can you truly enjoy your family and friends if you’re worn out and fatigued from trying to do everything on your own?

Q: What role can partners and family members play in helping women with lupus manage stress?

A: I feel most supported when the people around me take a genuine interest in my well-being and step in without having to be asked. My husband is awesome about asking me if there’s anything he can do to help around the kitchen or run errands. It’s been a great relief to let down my guard and allow him to help. He’s also good about stepping in if I butt heads with that one annoying family member. Everyone has one.

Q: Will you tell us a little bit about what you do to raise awareness about lupus?

A: I launched Lupus Sistas in 2013. My mission is to spread awareness not just about lupus facts but also to share my everyday experiences, to put a face to the disease. I share the ups and down of tackling life issues as a lupus patient.
I also have a passion for spreading lupus awareness among black women, the group most affected by lupus. Lupus is two to three times more common in black women than in white women. Lupus is also more common among other minority groups. I love going to health fairs in these communities to educate women on how to shed light on this disease and offer support. I think offering answers and support to the communities most affected by lupus is a win for the entire lupus community.

Q: What do you want people to know about lupus?

A: In many but not all cases, lupus is an invisible chronic illness. Because many people with lupus “don’t look sick,” I’ve found that their illness is not taken seriously. I’ve heard of people being accused of lying about having an illness by those closest to them. It can be very hurtful. There’s a need for a better understanding of what living with a chronic illness looks and feels like.

Q: What’s your advice for other women living with lupus?

A: In some communities, there’s a belief that because lupus affects your immune system, it’s related to HIV and AIDS. It’s not. In lupus, your immune system is overactive. In HIV and AIDS, the virus attacks your immune system so that it doesn’t work very well. I wish there wasn’t a stigma around HIV and AIDS. The stigma not only keeps people with HIV from getting care, but also keeps people with lupus from getting care. Instead of getting the treatment, education and support they need, people with lupus suffer in silence. These health fairs are ground zero for dispelling lupus myths.

I also want women to know that being diagnosed with lupus is not a death sentence. Life will change, but with good self-care, healthy eating habits and moderate exercise, life with lupus can be enjoyable. And last but not least, you must learn to be your own advocate. When you take ownership of your health—educating yourself, following your treatment plan, et cetera—you’ll be amazed at what you can accomplish.

The post Living With Lupus appeared first on Black Health Matters.

The post Poverty and Race Make Lupus Worse appeared first on Black Health Matters.

Roughly 18 million Americans suffer from gluten sensitivity, and that’s just the number of folks who have solved the mystery. Larger still is the number of people (some experts estimate this is as many as 1 in 2 people) walking around who are gluten sensitive but have absolutely no idea.

Some signs of a bad reaction to gluten—abdominal pain, stomach upset, gas, bloating, diarrhea and constipation—are fairly recognizable. But even those signs could be symptoms of other common stomach ailments. In fact, the vast majority of people with gluten sensitivity have no digestive symptoms at all.

Here are other warning signs of gluten sensitivity:

1. Migraine headaches. Many food sensitivities cause headaches and migraines, and gluten is no different in that respect. One showed that 56 percent of people who had been diagnosed with migraine headaches actually had an underlying gluten sensitivity. Once gluten was eliminated from their diet, the migraines resolved.
2. Chronic fatigue or fibromyalgia. Often a diagnosis of fibromyalgia or chronic fatigue is an indication that your primary care physician hasn’t been able to nail down the cause of your fatigue or pain.
3. Autoimmune diseases. Some autoimmune diseases—including lupus, multiple sclerosis, rheumatoid arthritis, psoriasis and ulcerative colitis—are linked to gluten insensitivity.
4. Brain fog. Gluten contains substances that can mimic morphine in some people, causing brain fog after a meal containing gluten.
5. Keratosis pilaris. Also known as chicken skin on the back of your arms, this skin condition is usually the result of a fatty acid deficiency and vitamin A deficiency.
6. Mood disorders. Because gluten sensitivity can disrupt your ability to absorb certain nutrients like B vitamins, vitamin D, iron, omega-3 fatty acids and zinc, all essential for mood and brain health, you could experience attention deficit disorder, anxiety or depression.
7. Joint pain. The body attacks the gluten and forms immune complexes that can settle in joints like the fingers, hips or knees, causing swelling, pain and inflammation.
8. Hormone imbalances. Unexplained infertility, PMS or PCOS could all be signs of hormonal imbalances triggered by gluten.

There’s no accepted medical test for gluten sensitivity, so before eliminating gluten from your diet, you should talk to your doctor about your symptoms. You may need to see an integrative practitioner or functional medicine physician for guidance.

The post Are You Gluten Sensitive? appeared first on Black Health Matters.

Part 6: Protections for Mom

Using our breasts helps protect them from cancer. Breastfeeding offers a benefit to moms—it protects our chest from breast cancer.
Nursing a baby might kick endometrial cancer to the curb. Lactation may ward off endometrial cancer. Knowledge is power, and it just might save your life.
It’s hard to swallow, but breastfeeding can even protect the esophagus. It seems strange that breastfeeding can protect you from getting cancer of the esophagus, but that’s what this study found.
I’d feel like a real boob if I got Hodgkin’s disease unnecessarily. Cancer is way scarier than a baby occasionally biting my nipple. I’ll do whatever I can to ward it off.
Ovarian cancer is to be avoided at all costs. Ovarian cancer can sneak up on you without showing many symptoms. I don’t want that to happen to me.
Using the lumps on your chest might help you avoid lumps in your neck. Breastfeeding lessens thyroid cancer risk.
I want to be there for my child’s milestones, and uterine cancer could cut that short. Uterine cancer is another cancer risk that can be decreased by breastfeeding.
I don’t want a ticker that keeps getting sicker because I didn’t breastfeed. I only have one heart, so I need it to be in tip-top condition. Breastfeeding makes me less likely to have cardiovascular disease, according to this study.
Breastfeeding may keep systemic lupus at bay, and that makes me a happy camper. Lupus isn’t on my bucket list, and I’d like to keep it that way.
UTIs are a nasty surprise, but breastfeeding may stop them from happening. Urinary tract infections are painful. Breastfeeding might prevent them in mothers.
I don’t want postpartum depression; I want to enjoy my baby. The only emotion I want to feel when I look at my baby is intense love. Sadness isn’t on the menu. If I breastfeed, I might get my wish for a blissful post-birth experience.
Breastfeeding could be a force field against diabetes. I’m a carboholic—I love bread, popcorn, and potatoes. I don’t want to count carbs and give myself injections. Breastfeeding might help me dodge that.
I can fit into my skinny jeans sooner than I thought if I breastfeed. This isn’t an earth-shattering reason to breastfeed, but it’s OK to be selfish once in a while. The sooner I can shed my pregnancy weight, the happier I’ll be.
Arthritis would cramp my style, so I’ll breastfeed now to help my older self later. I’m not a wimp when it comes to pain, but I don’t want to test my limits with arthritis.
Make no bones about it—breastfeeding is good for your skeleton. I don’t want my bones to give out before my body does. I want to stay active as long as I can, and breastfeeding may help me do that.
I don’t want to live my life like I’m one of the characters on “A Nightmare on Elm Street.” I need my sleep—always have, always will. I don’t want to spend all my time being awake. I won’t be able to function. This study says that “breastfed babies have better sleep patterns.”
Breastfeeding may put the pause in menopause for mothers. Hot flashes don’t appeal to me, so I’m good with putting the brakes on menopause.
Moms who quit smoking might keep cigarettes from butting back into their lives. Moms who quit smoking during pregnancy may have a decreased risk of picking up that bad habit again if they breastfeed.
Check back tomorrow for Part 7 of “The 111 Benefits of Breastfeeding.” Or catch up on Part 1 here, Part 2 here, Part 3 here, Part 4 here and Part 5 here.

The post The 111 Benefits of Breastfeeding—Part 6 appeared first on Black Health Matters.

Our insides are certainly important, but skin is your first layer of defense against the outside world. Skin can also give important clues to your overall health. Learn to take good care of your skin, so your skin can keep taking good care of you.

Skin protects your body in many ways. “The skin provides a barrier to protect the body from invasion by bacteria and other possible environmental hazards that can be dangerous for human health,” said Heidi Kong, M.D., a dermatologist with the National Institutes of Health.

Skin plays other roles, too. It contains nerve endings that let you feel when an object is too hot or sharp, so you can quickly pull away. Sweat glands and tiny blood vessels in your skin help to control your body temperature. And cells in your skin turn sunlight into vitamin D, which is important for healthy bones.

Skin can also alert you to a health problem. A red, itchy rash might signal allergies or infections, and a red “butterfly” rash on your face might be a sign of lupus. A yellow tint might indicate liver disease. And dark or unusual moles might be a warning sign of skin cancer. Be on the lookout for unexpected changes to your skin, and talk with your doctor if you have concerns.

Your skin can become too dry if you don’t drink enough fluids or spend too much time in sunny or dry conditions. “While washing hands is important for good hygiene, washing your hands too much can also lead to dry skin,” Dr. Kong said, especially if you wash with hot water and harsh soaps. To treat dry skin, use moisturizing creams or lotions, and use warm instead of hot water when you bathe and wash your hands. You can also try using a humidifier to make the air in your home less dry.

The sun can damage your skin as well. Sunlight contains ultraviolet light that causes sunburn and makes your skin age faster, leading to more wrinkles as you get older. “There’s a strong link between UV exposure and skin cancer,” Kong adds. So protect your skin from the sun. Wear hats and other protective clothing, use sunscreen with an SPF of at least 30, and restrict your time in the sun during the late morning and early afternoon hours, when sunlight is strongest.

Many skin researchers like Dr. Kong are studying the skin’s microbiome—the bacteria and other microscopic organisms that live on your skin. Some of these microbes can be helpful. Evidence suggests that they boost the body’s infection-fighting immune system and help keep you healthy. “But there are some skin diseases with known associations with certain microbes,” Dr. Kong said. “We’re trying to understand how those microbes differ between healthy people and people with skin diseases.” In the long run, scientists would like to find ways to support healthy skin microbes while reducing harmful ones.

Tips for Healthy Skin

• Wash up. Bathe in warm—not hot—water; use mild cleansers that don’t irritate and wash
• gently—don’t scrub.
• Block sun damage. Avoid intense sun exposure, use sunscreen and wear protective clothing.
• Don’t use tanning beds or sunlamps. They emit the same harmful UV radiation as the sun.
• Avoid dry skin. Drink plenty of water, and use gentle moisturizers, lotions or creams.
• Reduce stress. Stress can harm your skin and other body systems.
• Get enough sleep. Experts recommend about 9 hours a night for teens and 7 to 8 hours for adults.
• Speak up. Talk to your doctor if you notice any odd changes to your skin, like a rash or mole that changes size or color.

The post Have Healthy Skin for Life appeared first on Black Health Matters.

So you overdid it shoveling snow (winter’s finale, we hope!), hunched over your computer late-night trying to finish that project, or throwing that last punch in your boxing class. Or maybe you have lupus, multiple sclerosis or fibromyalgia, three medical conditions which can cause muscle aches and pains. No worries; we’ve got cures for you!

Stroll the pain reliever aisle at your local drug store. Over-the-counter (OTC) meds such as acetaminophen or ibuprofen can help relieve pain. Note that ibuprofen is an anti-inflammatory that also helps reduce swelling. Or give a medicated cream—Salonpas, Bengay, Tiger Balm—a try. The American Academy of Family Physicians has given OTC remedies the OK for healthy adults.

Rest an aching muscle. If you keep using a strained muscle, you could exacerbate the problem or cause more damage. Take a 48-hour break from the activity that made you sore. And get a good night’s sleep. It reduces stress and provides downtime your body needs to start self-repair.

Go cold, then hot. Ice sore muscles for 15 to 20 minutes three times a day for the first 24 to 72 hours. Ice numbs the pain and reduces swelling. If you’re still sore after that, apply heat compresses. Heat relaxes the soft tissues.

Take a nice, long bath using this muscle pain relief mixture: Mix 2 cups of Epsom salts with 10 drops of peppermint essential oil in a bowl. Stir the mixture into running, warm water. Soak until your skin wrinkles. The magnesium in the Epsom salts helps relax muscles, while the menthol in the peppermint essential oil blocks pain receptors

The post Pain Away! appeared first on Black Health Matters.

Entertainer Nick Cannon has teamed up with the National Medical Association to raise awareness of lupus nephritis. Lupus, a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues, can affect many different body systems, including your joints, heart, skin, lungs, kidneys and brain. There is no cure, but treatment can help control the symptoms.
Cannon, diagnosed with lupus nephritis in 2012, is featured in a new video to increase awareness about clinical trials and options for lupus nephritis studies.

The post Nick Cannon and the NMA Join Forces to Fight Lupus appeared first on Black Health Matters.

Multiple sclerosis (MS) is a mysterious disease. Who gets it, why they get it and how each case of the disease can be vastly different from the next one all have medical experts pretty puzzled.
What we do know: MS is an autoimmune disease that occurs when your immune system attacks your central nervous system. We don’t know what triggers the process, but here are seven factors that might contribute.
Gender. Montel Williams might be the celebrity name that comes to mind when you think about MS, but the disease disproportionately strikes women. And according to the experts, the gender gap is widening. It used to be two women to every one man, but new studies show it is approaching four women to every man. Another recent study says black women are more likely to contract MS than previously thought.
Genetics. Does someone else in your family have MS? Your risk is likely increased as a result of this. The risk is 1 in 750 for most folks. It’s 1 in 40 for those with a close family member with the disease, and 1 in 4 if your identical twin has it.
Birthdate. Spring babies are at higher risk of MS, according to a Finnish study. What explains this phenomenon? Your mom’s low levels of vitamin D during winter pregnancies.
Age. Anyone, including children, though that’s rare, can be diagnosed with MS, but it’s more likely to occur when you’re between the ages of 20 and 50.
Geography. You are at higher risk for MS the farther you live from the equator. Sweden? Check. Louisiana? Not so much. Researchers believe this might have something to do with how much vitamin D we have. Our bodies make vitamin D in response to sunlight. Live far from the equator, you make less.
Smoking status. Yet another reason to give up cigarettes: Smokers and ex-smokers are more likely to be diagnosed with MS than someone who never smoked. The more you smoke, the greater your risk. Though your risk is elevated even if you no longer smoke, quitting can help. The disease seems to progress more quickly in current smokers.
Autoimmune disease clusters. Some autoimmune conditions tend to occur together. That means if you have inflammatory bowel disease, you might also develop MS. There is some good news on this front: The link between lupus and MS doesn’t appear to be as strong.

The post 7 Things That Could Increase Your Risk of MS appeared first on Black Health Matters.

Lupus is running rampant among young black women, says a new University of Michigan study of lupus in the southeastern part of the state.
The rate of developing lupus was three times higher than previous estimates, reaching one in 537 black female Michiganders in the region, compared to one in 1,153 white women, according to the study’s findings. And black women were more likely to be diagnosed at a younger age, during their childbearing years, and face a higher degree of serious complications, including kidney failure.
The research, part of a landmark epidemiology study, is the largest of its kind ever performed in the U.S. focusing on lupus.
“There is a very poor understanding of what causes lupus. Identifying the population and dynamics involved helps us target our resources more effectively and better recognize risk factors for the development and progression of the disease,” says lead author Emily Somers, Ph.D., an assistant professor in the departments of Internal Medicine in the division of Rheumatology, Environmental Health Sciences, and Obstetrics and Gynecology at the U-M Medical and Public Health Schools. “We found a striking health disparity between black and white women. The disproportionate burden of disease was compounded by the fact that for black females, peak risk of developing lupus occurred in young adulthood.
“Lupus onset occurring before or during reproductive years can have significant implications for childbearing and risks in pregnancy, and of course may lead to a higher burden of health issues over the lifespan.”
Symptoms of lupus, a chronic, autoimmune disease, can include extreme fatigue, fever, headaches, painful or swollen joints, unusual hair loss, anemia, rashes and abnormal blood clotting. Serious organ damage can also occur, including kidney, heart and neurologic complications. Women are more at risk than men of developing lupus.
The U-M findings correspond with a sister project from Emory University in Atlanta. The Emory study found similar results: The incidence rate for lupus was three times higher for black women than for white women in Georgia.
“Our findings compel us to develop practices to improve screening for kidney disease among high-risk populations in order to better treat the condition and improve health outcomes for people with this chronic disease,” Somers says.

The post Study Finds High Lupus Rates Among Young Black Women appeared first on Black Health Matters.

Kidney disease, a condition in which the kidneys are damaged and can no longer filter blood properly, affects 26 million Americans. According to a new report from the National Kidney Foundation, more than half of all Americans are at risk of developing some form of kidney disease in their lifetime. End-stage kidney disease requires dialysis or a kidney transplant. The average American has a one in eight chance of suffering from the ailment. For African Americans, that number soars to one out of every three people.

This isn’t an entirely unexpected statistic given that diabetes and high blood pressure, the leading causes of kidney disease, both run rampant in the black community. Lupus, another condition that can cause kidney disease, is also more common among African Americans. More than 81,00 people in this country are on the kidney transplant waiting list, with only 18,000 transplants performed each year.

Teaming Up for Change

That’s why it wasn’t a stretch for Food Network’s Chef Aaron McCargo Jr. to help whip up healthy, yet tasty recipes when Fresenius Medical Care North America, a network of dialysis facilities that provides renal services throughout the U.S., Canada and Mexico, approached him to be part of their kidney-friendly initiative.

“I have a close family member with kidney failure, and a lot of friends dealing with hypertension and diabetes, which lead to kidney failure,” the “Big Daddy’s House” star says.

McCargo and a team of dietitians sat down with people who have kidney disease. “We heard the voices of the patients. They were telling us, ‘We’re frustrated. We’re limited in our diet. We don’t know what to cook,'” McCargo says. “We asked them what they crave, and came up with recipes that are great tasting and affordable.”

McCargo’s Top Tips for a Kidney-Friendly Diet

• Read the recipe first to make sure it’s something you can do.
• Write down the ingredients “so you don’t come home with everything but what you need,” McCargo says. “If I don’t make my grocery list and stick to it, I’ll go buck wild. I’ll go in the store for kale and asparagus and come out with bags of Doritos.”
• Keep it simple. “We tend to want to add Tabasco or barbeque sauce on everything,” he says. “Don’t deviate from the recipe. After the first time or two, you can add your flair.”

What made the chef’s kidney-friendly menu? Lots of unexpected things, such as glazed pork chops, meatballs, shrimp scampi, taco pizza and baby back ribs (recipe below)—all delicious items with the big, bold flavor for which McCargo is known. “We used dry rubs and fresher spices. We eliminated salt and things they can’t have in their diet. It’s amazing the response we get from folks,” he says. “‘There’s no salt in this? There’s no fat? How’d you make these wings crispy?'”

Perhaps the best thing about these recipes: The dietitian-approved meals are good for everybody. “You don’t have to be on dialysis to eat these,” McCargo says.

Chef McCargo’s Sauce-less BBQ Baby Back Ribs
2 slabs (about 3-1/2 pounds) baby back ribs
1 portion of rub

Rub
1 cup packed dark brown sugar
1 teaspoon black pepper
1 teaspoon red pepper flakes
1 teaspoon smoked paprika
2 teaspoons granulated garlic
2 teaspoons dehydrated onion flakes
2 teaspoons dark chili powder
12 mini-ears fresh or frozen corn on the cob

Heat oven to 400F. Rub both slabs of ribs on both sides with rub mixture. Place ribs on wire rack lined tray. Wrap tightly with aluminum foil and bake for 1-1/2 to 2 hours. Remove from oven and take off foil. Using tongs, set ribs aside. Drain liquids from the pan, and then place ribs back on tray. Cook for an additional 15 minutes or until desired crispness. Let rest for 5 to 10 minutes, then cut and serve.

To microwave corn on the cob, use a microwave-safe 9×9-inch casserole pan. Stand all the mini-ears of corn up on end in the dish. Pour about 1/2 inch of water into the dish. Cover tightly with plastic wrap. Microwave 5 to 7 minutes on high. Serves 12.

Option to Prepare on Grill:
Indirect cooking in a barbecue pit is recommended to prevent burning. Cook at 250F (curled side of ribs facing up) for the first 3 hours, then increase temperature to 300F for the final 3 hours.

To grill corn on the cob, shuck each ear of corn and remove husk and any remaining silk strands. Wrap the corn in aluminum foil and place on the grill for approximately 25 minutes, turning occasionally until corn is tender.

Note: 1 serving = 1/6 slab (1/3 pound bone-in raw weight) + 1 mini-ear of corn.

Calories: 544, Protein: 23g, Carbohydrates: 27g, Total Fat: 39g, Saturated Fat: 17g, Trans Fat: 3g, Cholesterol: 99g, Sodium: 84mg, Potassium: 426mg, Phosphorus: 194mg

The post Kidney-Friendly: Big and Bold Without the Salt appeared first on Black Health Matters.

We sometimes think they lead charmed lives, far removed from anything painful or ugly, but celebrities can wage war with disease just like us normal folks. Here’s what some of your faves are dealing with and how they’re coping.
Missy Elliott—Graves’ Disease
The prolific Missy Elliott all but disappeared from the music scene five years ago because she was suffering from Graves’ disease, an autoimmune disorder that affects the thyroid. The Grammy-winning artist/producer said the symptoms made it hard for her to hold a pen to write. After taking medication for a while, and losing 30 pounds, Elliott is now managing her disease through diet and exercise. And she’s back on the music scene.
Kareem Abdul-Jabbar—Migraines
Basketball legend Kareem Abdul-Jabbar says stress is the reason he suffers from migraines. He had his first severe headache at age 14, and has used a variety of stress relievers, including acupuncture, yoga, massage and biofeedback. “You can’t eliminate stress,” he says, “but what I’ve finally been able to do is learn how to manage it.”
Former pro footballer Terrell Davis, singer Janet Jackson and 2013 French Open winner Serena Williams also have migraines.
Vanessa Bell Calloway—Breast Cancer
Stage, screen and TV actress Vanessa Bell Calloway recently talked about her battle with breast cancer. The former dancer says she always exercised and ate healthy food. And she got annual mammograms and Pap smears. Four years ago, however, she says something felt off in her body. Breast cancer “was the last thing on my mind because since the age of 40, my mammograms came back clear,” she told theGrio.com.
Diagnosed with ductal carinoma in situ, an early stage of breast cancer, Bell Calloway had a mastectomy and reconstruction. She’s been cancer free for the past four years.
Halle Berry—Diabetes
Halle Berry was diagnosed with type 1 diabetes 20 years ago when she slipped into a coma while shooting “Living Dolls.” It was later learned the now-pregnant Oscar-winning actress was probably misdiagnosed and that she actually has type 2 diabetes, which she manages with diet and exercise.
Toni Braxton—Heart Disease and Lupus
After fainting while performing in a Broadway show in 2003, Toni Braxton found out she had pericarditis, an inflammation of the tissue surrounding the heart. In 2008, she was diagnosed with microvascular angina, also known as small vessel disease. In 2010 the singer revealed that also has lupus, a chronic inflammatory disease that affects joints, skin and organs.
Nick Cannon—Lupus
The 32-year-old “America’s Got Talent” host tweeted from the hospital that he was in mild kidney failure in January 2012. Eventually he revealed he’d been diagnosed with a form of lupus that affects the kidneys. Cannon says he has scaled back his busy schedule, though he announced recently that he’s bringing back “Soul Train.”
Lil Wayne—Epilepsy
When Lil Wayne was admitted to the hospital in critical condition in March after suffering three seizures in a row (and last October for the same reason), the media speculated his health scare might be linked to his constant consumption of cough syrup. But the chart-topping rapper revealed in a Power 106 radio interview that he suffers from epilepsy, and that he’s had “a bunch of seizures” the public never hears about.
Emmitt Smith—Gout
The former NFL running back and “Dancing With the Stars” winner is one of about 8 million Americans who suffer from gout, a painful form of inflammatory arthritis. “There’s a perception that gout is an old man’s disease. But I’m 44 and a former athlete, and I have it,” Smith told Everyday Health’s Sanjay Gupta, M.D. “There’s no telling how many people are walking around in pain and just think it’s an ache or a sprain.”
Gout occurs when a high level of uric acid in the blood forms crystals in joints and surrounding tissue. Complications include kidney stones, joint deformities and cardiovascular disease. Several factors can raise your risk for gout, including certain foods (shellfish, red meat, sugary beverages and alcohol), a family history, obesity, high cholesterol, high blood pressure and diabetes. The disease is most common in men older than 40. There’s no cure, but medication and lifestyle changes may keep its effects under control. “I started monitoring the things I eat and increased my water intake. Exercise definitely can help,” Smith says.
Montel Williams—Multiple Sclerosis
In 1999, daytime talk show host Montel Williams announced that he had been diagnosed with multiple sclerosis, a debilitating autoimmune disease that affects the brain and spinal cord. One of the primary symptoms of the disease is chronic pain, which Williams said he’d had for 10 years by the time he made his announcement.
Singer Tamia has multiple sclerosis, too.
Venus Williams—Sjogren’s Syndrome
The tennis star withdrew from the U.S. Open in 2011 due to symptoms of Sjogren’s Syndrome, an autoimmune disease that causes the body to attack its own moisture-producing glands (tear, saliva and sweat glands). The disease, which affects about 4 million Americans, causes debilitating joint pain, numbness and fatigue. Williams is being treated, but there is no cure.

The post Celebrities Battling Illness appeared first on Black Health Matters.

What Is Endometriosis?

Endometriosis is a common health problem in women. It gets its name from the word, endometrium, the tissue that lines the uterus or womb. Endometriosis occurs when this tissue grows outside of the uterus on other organs or structures in the body. Most often, endometriosis is found on the:

-Ovaries
-Fallopian tubes
-Tissues that hold the uterus in place
-Outer surface of the uterus
-Lining of the pelvic cavity

Other sites for growths can include the vagina, cervix, vulva, bowel, bladder, or rectum. In rare cases, endometriosis has been found in other parts of the body, such as the lungs, brain, and skin.

What Are the Symptoms of Endometriosis?

The most common symptom of endometriosis is pain in the lower abdomen or pelvis, or the lower back, mainly during menstrual periods. The amount of pain a woman feels does not depend on how much endometriosis she has. Some women have no pain, even though their disease affects large areas. Other women with endometriosis have severe pain even though they have only a few small growths. Symptoms of endometriosis can include:

-Very painful menstrual cramps; pain may get worse over time
-Chronic pain in the lower back and pelvis
-Pain during or after sex
-Intestinal pain
-Painful bowel movements or painful urination during menstrual periods
-Spotting or bleeding between menstrual periods
-Infertility or not being able to get pregnant
-Fatigue
-Diarrhea, constipation, bloating, or nausea, especially during menstrual periods

Recent research shows a link between other health problems in women with endometriosis and their families. Some of these include:
-Allergies, asthma, and chemical sensitivities
-Autoimmune diseases, in which the body’s system that fights illness attacks itself instead. These can include hypothyroidism, multiple sclerosis, and lupus.
-Chronic fatigue syndrome (CFS) and fibromyalgia
-Being more likely to get infections and mononucleosis
-Mitral valve prolapse, a condition in which one of the heart’s valves does not close as tightly as normal
-Frequent yeast infections
-Certain cancers, such as ovarian, breast, endocrine, kidney, thyroid, brain, and colon cancers, and melanoma and non-Hodgkin’s lymphoma

Why Does Endometriosis Cause Pain and Health Problems?

Growths of endometriosis are benign. But they still can cause many problems. To see why, it helps to understand a woman’s menstrual cycle. Every month, hormones cause the lining of a woman’s uterus to build up with tissue and blood vessels. If a woman does not get pregnant, the uterus sheds this tissue and blood. It comes out of the body through the vagina as her menstrual period.

Patches of endometriosis also respond to the hormones produced during the menstrual cycle. With the passage of time, the growths of endometriosis may expand by adding extra tissue and blood. The symptoms of endometriosis often get worse.
Tissue and blood that is shed into the body can cause inflammation, scar tissue, and pain. As endometrial tissue grows, it can cover or grow into the ovaries and block the fallopian tubes. Trapped blood in the ovaries can form cysts, or closed sacs. It also can cause inflammation and cause the body to form scar tissue and adhesions, tissue that sometimes binds organs together. This scar tissue may cause pelvic pain and make it hard for women to get pregnant. The growths can also cause problems in the intestines and bladder.

Who Gets Endometriosis?

More than five million women in the United States have endometriosis. It is one of the most common health problems for women. It can occur in any teen or woman who has menstrual periods, but it is most common in women in their 30s and 40s.
The symptoms of endometriosis stop for a time during pregnancy. Symptoms also tend to decrease with menopause, when menstrual periods end for good. In some cases, women who take menopausal hormone therapy may still have symptoms of endometriosis.

What Can Raise My Chances of Getting Endometriosis?

You might be more likely to get endometriosis if you have:
-Never had children
-Menstrual periods that last more than seven days
-Short menstrual cycles (27 days or less)
-A family member (mother, aunt, sister) with endometriosis
-A health problem that prevents normal passage of menstrual blood flow
-Damage to cells in the pelvis from an infection
-How Can I Reduce My Chances of Getting Endometriosis?
-There are no definite ways to lower your chances of getting endometriosis. Yet, since the hormone estrogen is involved in thickening the lining of the uterus during the menstrual cycle, you can try to lower levels of estrogen in your body.
-To keep lower estrogen levels in your body, you can:
-Exercise regularly
-Keep a low amount of body fat
-Avoid large amounts of alcohol and drinks with caffeine

Why Is It Important to Find Out If I Have Endometriosis?

The pain of endometriosis can interfere with your life. Studies show that women with endometriosis often skip school, work and social events. This health problem can also get in the way of relationships with your partner, friends, children and co-workers. Plus, endometriosis can make it hard for you to get pregnant.

Finding out that you have endometriosis is the first step in taking back your life. Many treatments can control the symptoms. Medicine can relieve your pain. When endometriosis causes fertility problems, surgery can boost your chances of getting pregnant.

How Do I Know That I Have Endometriosis?

If you have symptoms of this disease, talk with your doctor or your obstetrician/gynecologist (OB/GYN). An OB/GYN has special training to diagnose and treat this condition. Sometimes endometriosis is mistaken for other health problems that cause pelvic pain and the exact cause might be hard to pinpoint.

The doctor will talk to you about your symptoms and health history. The doctor may also do these tests to check for clues of endometriosis:

-Pelvic exam. Your doctor will perform a pelvic exam to feel for large cysts or scars behind your uterus. Smaller areas of endometriosis are hard to feel.

-Ultrasound. Your doctor could perform an ultrasound, an imaging test to see if there are ovarian cysts from endometriosis. During a vaginal ultrasound, the doctor will insert a wand-shaped scanner into your vagina. During an ultrasound of your pelvis, a scanner is moved across your abdomen. Both tests use sound waves to make pictures of your reproductive organs. Magnetic resonance imaging (MRI) is another common imaging test that can produce a picture of the inside of your body.

-Laparoscopy. The only way for your doctor to know for sure that you have endometriosis is to look inside your abdomen to see endometriosis tissue. He or she can do this through a minor surgery called laparoscopy. You will receive general anesthesia before the surgery. Then, your abdomen is expanded with a gas to make it easy to see your organs. A tiny cut is made in your abdomen and a thin tube with a light is placed inside to see growths from endometriosis. Sometimes doctors can diagnose endometriosis just by seeing the growths. Other times, they need to take a small sample of tissue and study it under a microscope. If your doctor does not find signs of an ovarian cyst during an ultrasound, before doing a laparoscopy, your doctor may prescribe birth control pills to control your menstrual cycle. Sometimes this treatment helps lessen pelvic pain during your period. Some doctors may offer another treatment that blocks the menstrual cycle and lowers the amount of estrogen your body makes before doing a laparoscopy. This treatment is a medicine called a gonadotropin releasing hormone (GnRH) agonist, which also may help pelvic pain. If your pain improves on this medicine, the doctor will likely think that you have endometriosis.
Laparoscopy is often recommended for diagnosis and treatment if the pelvic pain persists, even after taking birth control pills and pain medicine.

What Causes Endometriosis?

No one knows for sure what causes this disease, but experts have a number of theories:

-Since endometriosis runs in families, it may be carried in the genes, or some families have traits that make them more likely to get it.
-Endometrial tissue may move from the uterus to other body parts through the blood system or lymph system.
-If a woman has a faulty immune system it will fail to find and destroy endometrial tissue growing outside of the uterus. Recent research shows that immune system disorders and certain cancers are more common in women with endometriosis.
-The hormone estrogen appears to promote the growth of endometriosis. So, some research is looking at whether it is a disease of the endocrine system, the body’s system of glands, hormones, and other secretions.
-Endometrial tissue has been found in abdominal scars and might have been moved there by mistake during a surgery.
-Small amounts of tissue from when a woman was an embryo might later become endometriosis.
-New research shows a link between dioxin exposure and getting endometriosis. Dioxin is a toxic chemical from the making of pesticides and the burning of wastes. More research is needed to find out whether man-made chemicals cause endometriosis.
-Endometrial tissue may back up into the abdomen through the fallopian tubes during a woman’s monthly period. This transplanted tissue could grow outside of the uterus. However, most experts agree that this theory does not entirely explain why endometriosis develops.

How Is Endometriosis Treated?

There is no cure for endometriosis, but there are many treatments for the pain and infertility that it causes. Talk with your doctor about what option is best for you. The treatment you choose will depend on your symptoms, age, and plans for getting pregnant.

-Pain medication. For some women with mild symptoms, doctors may suggest taking over-the-counter medicines for pain. These include ibuprofen (Advil and Motrin) or naproxen (Aleve). When these medicines don’t help, doctors may prescribe stronger pain relievers.
-Hormone treatment. When pain medicine is not enough, doctors often recommend hormone medicines to treat endometriosis. Only women who do not wish to become pregnant can use these drugs. Hormone treatment is best for women with small growths who do not have bad pain. Hormones come in many forms including pills, shots, and nasal sprays.

Common hormones used for endometriosis include:
-Birth control pills to decrease the amount of menstrual flow and prevent overgrowth of tissue that lines the uterus. Most birth control pills contain two hormones, estrogen and progestin. Once a woman stops taking them, she can get pregnant again. Stopping these pills will cause the symptoms of endometriosis to return.

-GnRH agonists and antagonists greatly reduce the amount of estrogen in a woman’s body, which stops the menstrual cycle. These drugs should not be used alone because they can cause side effects similar to those during menopause, such as hot flashes, bone loss, and vaginal dryness. Taking a low dose of progestin or estrogen along with these drugs can protect against these side effects. When a woman stops taking this medicine, monthly periods and the ability to get pregnant return. She also might stay free of the problems of endometriosis for months or years afterward.

-Progestins. The hormone progestin can shrink spots of endometriosis by working against the effects of estrogen on the tissue. It will stop a woman’s menstrual periods, but can cause irregular vaginal bleeding. Medroxyprogesterone (Depo-Provera) is a common progestin taken as a shot. Side effects of progestin can include weight gain, depressed mood, and decreased bone growth.

-Danazol is a weak male hormone that lowers the levels of estrogen and progesterone in a woman’s body. This stops a woman’s period or makes it come less often. It is not often the first choice for treatment due to its side effects, such as oily skin, weight gain, tiredness, smaller breasts, and facial hair growth. It does not prevent pregnancy and can harm a baby growing in the uterus. It also cannot be used with other hormones, such as birth control pills.

-Surgery. Surgery is usually the best choice for women with severe endometriosis—many growths, a great deal of pain, or fertility problems. There are both minor and more complex surgeries that can help. Your doctor might suggest one of the following:
Laparoscopy can be used to diagnose and treat endometriosis. During this surgery, doctors remove growths and scar tissue or burn them away. The goal is to treat the endometriosis without harming the healthy tissue around it. Women recover from laparoscopy much faster than from major abdominal surgery.

-Laparotomy or major abdominal surgery that involves a much larger cut in the abdomen than with laparoscopy. This allows the doctor to reach and remove growths of endometriosis in the pelvis or abdomen.

-Hysterectomy is a surgery in which the doctor removes the uterus. Removing the ovaries as well can help ensure that endometriosis will not return. This is done when the endometriosis has severely damaged these organs. A woman cannot get pregnant after this surgery, so it should only be considered as a last resort.

How Do I Cope With a Disease That Has No Cure?

You may feel many emotions—sadness, fright, anger, confusion, and loneliness. It is important to get support to cope with endometriosis. Consider joining a support group to talk with other women who have endometriosis. There are support groups on the Internet and in many communities.

It is also important to learn as much as you can about the disease. Talking with friends, family, and your doctor can help.

The post The Truth About Endometriosis appeared first on Black Health Matters.