Shelley Gerson 

Associate Director of US Patient Advocacy  

at argenx 

Meriel Parker 

Myositis Caregiver, Rare Disease Advocate  

Caregivers are the cornerstone of the autoimmune illness community. Their support, compassion, and tenacity are essential to patients pursuing the best quality of life possible. Meriel Parker, a Myositis Caregiver and Rare Disease Advocate, and Shelley Gerson, Associate Director of US Patient Advocacy at argenx, discussed life with an autoimmune condition from a caregiver perspective at the Black Health Matters 2025 Health Summit & Expo Recap.  

The two bonded over their mutual experience as caregivers.  

“Meriel and I discovered that we have a common experience, and that we both had dads that had chronic illness, and were caregivers,” Gerson told the audience.  

She requested that other caregivers in the room reveal themselves. Raised hands sliced through the air, proving how common the role is in society.  

According to the Journal of Neurology, “Sporadic inclusion body myositis (IBM) is the most common acquired myopathy in individuals older than 50 years.” Delays to diagnosis are frequent with autoimmune conditions.  

Parker explained how a family outing to a nature center led her father to receive a life-changing diagnosis. “My dad was a formidable, strong man, an entrepreneur. No dream was too big for him,” she said.  

His dreams included hiking. Parker and her daughter were joining him on a family hike to the same location he had taken Parker to previously. The older man was familiar with the terrain. His slowing down was a surprise.  

“He said, ‘My legs are so tired. I just can’t make it up the hill,’ and the hill was a fraction of what I’ve just stepped up on this stage,” she said.  

“It was just a little gradual slope,” she continued, gesturing to the few steps she walked up to join Gerson on stage.  

She knew this was no simple backache.  

“I didn’t say it out loud because I didn’t want him to be concerned, but I said, we’re in trouble because nothing would grip my father, let alone a small sloping hill,” Parker continued. “That began our journey.”  

It was a journey full of red tape that Parker was uniquely prepared for.  

“Having worked in healthcare, I have found, and I’ve seen that, for lack of a better term, the squeaky wheel gets the grease,” she said. “Older African Americans tend to have relatively higher rates of chronic illness than other race/ethnic groups,” according to the Journal of Cross-Cultural Gerontology. They require support.  

Her family spoke on her father’s behalf.  

An autoimmune disease is not like a severed limb or a dislocated joint. It requires detective work to identify.  

“We got him set up with a surgeon, a back specialist to talk with, and went 

through a litany of appointments,” Parker continued. She described their approach to the process as “diligent.”  

“We asked the right questions, and we prompted for referrals to specialists.”  

It is important caregivers step in, because patients might be unable to advocate for themselves due to the effects of their conditions. “When a person is not feeling well, they are trying to manage just living with the condition and the symptoms. It’s very challenging,” said Parker. “We would go to all of his appointments together. Either my mom went with him, or I did, and we would work as a team.”  

Multi-generational living helped the family work together even better. “My father said to me, If I’m going to fight this, if you really want me to be there with you and to fight this, I need to live in the same house as you and my granddaughter because you all are my heir, and that will give me the strength and the joy to be able to live through whatever days I have,’” said Parker.  

They started house hunting immediately. Living with family helped Parker’s father navigate the challenges of the disease, progressing with necessary support. “He went to a cane, and then a rollator, and then to a wheelchair, and a mobilized motorized wheelchair,” said Parker. Family was there to help him learn to use each tool. “The four of us moved in together, and we worked as a unit.”  

They dedicated their bodies to support his body, something caregivers do daily. “His physical strength declined, our physical strength increased,” said Parker.  

The Journal of Geriatric Nursing reports that “The taxing caregiving role often results in psychological and physiological stressors that negatively impact the personal health of the caregiver.” According to the Journal of Family Nursing, “Family caregivers’ support of patients with chronic, life-limiting illness includes difficult, life-altering, and often long-term tasks.” 

Parker confirmed that caregiving requires immense pressure.  

“It’s not unimportant for us to focus on the fact that if you’re a caregiver, you have to take good care of yourself. I learned firsthand of the toll that the stress takes on you,” she said. “But we did what we had to do to keep him with us as long as we could.”  

She devoted herself to her father’s needs to the exclusion of her own. “I did not want to have any regrets, and so I was going to pour in every ounce of energy that I could into having every moment with my father,” said Parker.  

Denying herself the care she needed weakened a core element of the team caring for her father. She found herself seeking treatment soon.  

“I went without sleep a lot, and I started to have muscle tremors on my own and had started to go to a specialist for diagnosis,” she said. During the assessment, the doctor advised her to make changes in her routine. They paid off.  

“I prioritized sleep, and maybe getting a massage once a month, and taking a walk, and taking some time for myself to actually have a break. It was necessary for me to be the best caregiver that I could be for my father,” she said.  

She encouraged the caregivers in the room to consider their physical and mental health before they start deteriorating.  

“I learned the lesson the hard way.”  

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•  Red blood cells, which carry oxygen throughout your body
• White blood cells, which fight infection
• Platelets, which control bleeding, are regularly generated in a healthy body to replace old, dying ones. The excessive production of white blood cells in the bone marrow leads to blood cancers.

There Are Different Types of Blood Cancer

Leukemia, lymphoma, and Myeloma are some of the most common types of blood cancer.

Leukemia

• Leukemia is the most common blood cancer in the U.S. and the most common form of childhood cancer. There are many types of leukemia, but in general, it occurs in the bone marrow when abnormal white blood cells are produced at an abnormally high rate. This interferes with the bone marrow’s ability to produce red blood cells and platelets.

Subcategories of leukemia:

• Acute erythroid leukemia, Acute lymphoblastic leukemia (ALL), Acute megakaryoblastic leukemia, Acute myeloid leukemia (AML), Acute promyelocytic leukemia (APL), Chronic lymphocytic leukemia (CLL), Chronic myeloid leukemia (CML), Chronic myelomonocytic leukemia (CMML), Childhood leukemia, Hairy cell leukemia (HCL), Large granular lymphocytic leukemia (LGLL), Mast cell leukaemia (MCL).

Lymphoma

•  Lymphoma is a type of cancer that affects the lymphatic system, which plays a crucial role in the body’s immune response to infection. Lymphoma cells can form tumors in areas such as your lymph nodes. There are two primary forms: Hodgkin and non-Hodgkin lymphoma.

Subcategories of lymphoma

• Burkitt lymphoma, Diffuse large B-cell lymphoma (DLBCL), Double-hit lymphoma Follicular lymphoma, Grey zone lymphoma, High-grade B-cell lymphoma not otherwise specified (NOS), Hodgkin lymphoma, MALT lymphoma, Mantle cell lymphoma, Nodal marginal zone lymphoma, Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL), Non-Hodgkin lymphoma, Peripheral T cell lymphoma (PTCL), Primary central nervous system lymphoma (PCNSL), Skin lymphoma (cutaneous lymphoma), Small lymphocytic lymphoma (SLL), Splenic marginal zone lymphoma, Triple-hit lymphoma, Waldenström macroglobulinemia (WM).

Myeloma

• Myeloma originates in the bone marrow and affects white blood cells called plasma cells, a type of white blood cell that plays a crucial role in the immune system by producing antibodies to combat germs. Multiple Myeloma is the most common subtype of plasma cell neoplasms. Symptoms usually don’t appear until the cancer is widespread and advanced. Rarer forms of blood cancer include:
  • Myeloproliferative neoplasms (MPN). In this type of cancer, the bone marrow produces an excessive number of white blood cells, red blood cells, or platelets.
  • Myelodysplastic syndromes (MDS). With MDS, your bone marrow makes abnormal blood cells. Sometimes, blood cells are abnormal because they fail to develop fully. Immature cells are called blasts.

• Non-cancerous blood conditions: MGUS

Risk Factors

For Blood Cancer

• Certain factors may play a role in increasing your blood cancer risk, including:
• Age. Your risk of developing a condition increases as you age.
•  Sex. Blood cancers are more common in males.
• Smoking. A smoking history or exposure to secondhand smoke may increase your risk.
• Exposure to toxic chemicals. Long-term exposure to benzene and formaldehyde can increase your risk of specific health issues. You’re more likely to encounter them if you work in an industry like manufacturing.
• Previous cancer treatment. Previous chemotherapy or radiation therapy may increase your risk of developing blood cancer.
• Biological family history. Some types of blood cancers may run in families. But most people who receive a diagnosis don’t have a family member with blood cancer.
•  Several autoimmune diseases, genetic disorders, and conditions that cause long-term inflammation are associated with increased blood cancer risk. Blood cancers aren’t avoidable.

But even someone with a clean bill of health can develop blood cancer. However, you can lower your risk by avoiding certain risk factors, such as smoking.

Additional Risk Factors for Leukemia, Lymphoma, and Myeloma

Leukemia: Advancing age, being male, family history of blood cancer, smoking, genetic disorders like Down syndrome, Chronic exposure to high doses of radiation or industrial chemicals, and a History of chemotherapy or radiation cancer treatment.

Lymphoma: advancing age, although people between the ages of 15 and 35 are at risk for Hodgkin lymphoma; being male; a family history of blood cancer; and a History of infection and disease. For example, the Epstein-Barr virus, which causes mono, can increase the risk for Hodgkin and autoimmune disorders, such as rheumatoid arthritis, a weakened immune system, Chronic exposure to certain industrial chemicals, and radiation.

Myeloma: Advancing age, being male, being African American, Family history of blood cancer or other plasma cell diseases, such as monoclonal gammopathy of undetermined significance (MGUS) or solitary plasmacytoma, being overweight or obese, and Chronic exposure to radiation and chemicals.

Symptoms

People with blood cancer may experience a range of symptoms, including:

• Fatigue
• Shortness of breath
• Swollen lymph nodes
• Frequent infections

Other symptoms include: Bone pain, Drenching night sweats, Enlarged liver or spleen, Joint pain, Persistent fever, Unexplained weight loss, Unusual bruising or bleeding (warning signs include tiny red skin spots or purplish skin patches), rash, or itchy skin that is unexplained. Learn more about the symptoms of blood cancer.

Bruises: On lighter skin, bruises start red and gradually darken. However, on darker skin, bruises may be hard to see at first but become darker than the surrounding skin over time.

Rashes: They often appear as clusters of tiny spots or larger blotches. On lighter skin, rashes look red or purple. On Black and brown skin, they appear as dark purple or darker spots. These spots don’t fade when pressed.

Paleness (A Loss of Pallor): Easier to spot in light skin as unusual paleness. In individuals with Black or brown skin, pallor may appear grayish or manifest as paler palms, lips, gums, tongue, or nail beds. For all skin types, pale inner eyelids can also be a sign.

How is Blood Cancer Diagnosed?

• Leukemia: Your doctor will order a complete blood count (CBC) test, which can help identify abnormal levels of white blood cells in relation to red blood cells and platelets.
• Lymphoma: Your doctor will need to perform a biopsy, which involves removing a small portion of tissue for examination under a microscope. In some cases, your doctor may also order an X-ray, CT, or PET scan to detect swollen lymph nodes.
• Myeloma: Your doctor will order a CBC, as well as other blood or urine tests, to detect chemicals or proteins produced as a result of myeloma development. In some cases, bone marrow biopsy, X-ray, MRI, PET, and CT scans can be used to confirm the presence and extent of the spread.

How is Blood Cancer Treated?

Common treatments for blood cancer include:

• Chemotherapy. Chemotherapy is a primary treatment for blood cancer. It kills cancer cells to either slow down the disease’s progress or eliminate the cancer. Healthcare providers use various types of chemotherapy drugs to treat different blood cancers.
•  Radiation therapy. This treatment uses radiation to damage the DNA in abnormal cells, preventing them from replicating. Providers may use radiation to ease symptoms (palliative care). They often combine radiation therapy with other forms of treatment.
•  Immunotherapy. This treatment improves your immune system’s ability to fight cancer. Some of the most commonly used immunotherapies for blood cancer are monoclonal antibodies and CAR T-cell therapy.
• Targeted therapy. These treatments target weaknesses in cancer cells related to abnormal genetic mutations.
• Autologous stem cell transplant. Providers can collect bone marrow stem cells from your body before giving you high doses of chemotherapy. Once chemotherapy kills the cancer cells, they’ll give your healthy stem cells back to you. They’ll develop into healthy blood cells.
• Allogeneic stem cell transplant. Sometimes, damaged bone marrow needs to be replaced with healthy bone marrow. Providers identify a suitable bone marrow donor and use the donor’s cells to replace your damaged ones.
•  Stem cell transplantation: Healthy stem cells can be infused into your body to help resume healthy blood production following therapy to destroy malignant blood cells.

Resources

Blood Cancer United.org

Yale Medicine: Blood Cancers

Summa Health: Leukemia Risk Factors

Blood Cancer UK symptoms and signs

International Myeloma Foundation

Race and Ethnicity Risk Factors for Leukemia

Cleveland Clinic

The post Understanding Blood Cancers appeared first on Black Health Matters.

The Question That Started It All

According to Deadline, an Italian journalist named Federica Polidoro asked this question: “What was lost during the politically correct era? And what can we expect in Hollywood? Now that the Me Too and the Black Lives Matter Movement are done [according to her].

Garfield was stunned into silence. Edebiri started absorbing the unexpected macroaggressions. Roberts, the Oscar-winning actress, stepped in and said, “I’m sorry, with your dark glasses on, I’m not sure who you are talking to.”

That’s when Polidoro said “Andrew and Julia,” specifically leaving Ayo out. Then she repeated the entire question…again. The duo looked at one another. Garfield was clearly not touching that question.

I Am Going to Answer Anyway

Before Edebiri replied, she mentioned that she was curious as to why she wasn’t included in the discussion. Was it purposeful? Crickets. She received no response at all from Polidoro, as if she were not sitting there.

But the award-winning actress, primarily known for the Hulu series The Bear, said, “I don’t think it’s done. It’s not done at all. I think maybe hashtags might not be used as much, but I do think that there’s work being done by activists, by people, every day, that’s beautiful, important work that’s not finished, that’s really, really active for a reason, for a reason, because this world is really charged,” she continued.

“Maybe there’s not mainstream coverage in the way that there might have been daily headlines in the way that it might have been eight or so years ago, but I don’t think that means that the work is done. That’s what I would say.”

Garfield and Roberts agreed that although coverage is not as constant on both fronts as it once was, #MeToo, started by Tarana Burke, and #BlackLivesMatter are not over.

Some Journalists (Still) Just Don’t Understand

Reactions on social media to this interview have been swift. Some have gone to Polidoro’s social accounts to leave a few comments of their own. It prompted a statement that doesn’t make things any better for her. She mentions her long journalistic record, but never explains her erasure of Edebiri.

Reminds us of a specific person talking to a qualified reporter recently, as if she didn’t belong.

But Edebiri Will Be Moving On to Her Next Big Thing

Next spring,  the 29-year-old Edebiri is coming to Broadway. She will be starring opposite Don Cheadle in a revival of Proof. This is a Pulitzer Prize and Tony Award-winning play by David Auburn about struggling with mathematical genius and mental illness. Edebiri will be doing the teeth gnashing after caring with her seriously ill father (Cheadle), who battled an illness related to his psychological well-being.

The title of the play comes from someone discovering some mathematical formula that is “proof” of some theory, and I suspect Edebiri will have her own tour de force every night.

So she can’t get too distracted by this dustup.

 

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And every time someone says a Black woman handles some slight with “grace,” I think about the connection between suppressed rage and autoimmune diseases. It can’t cost us our health. But that’s a story for another day,

The post Ayo Edebiri Will Not Be Ignored appeared first on Black Health Matters.

Ayesha Patrick Opens Up About How Psoriasis Has Impacted Her Body & Mind

This lack of representation can make it even harder to recognize, manage, and accept a chronic autoimmune disease that already impacts both the body and mind. In this candid interview, Ayesha Patrick, founder of The PsoriaSis Collective, opens up about her lifelong experience living with psoriasis. She speaks on the challenges of accessing culturally competent care and the ongoing importance of advocacy, education, and community support for patients of color navigating a world that still has much to learn.

Psoriasis Had Been a Life-Long Journey, But the Pandemic Was a Turning Point

BHM: When did you first begin noticing symptoms, and can you share a little about psoriasis as an autoimmune disease in general?

Ayesha Patrick: I’ve had psoriasis my entire life. I just turned 45, so that’s a long time. As a kid, I had no concept of what it was or what it was called. My twin sister and I both had it, but my mom called it “winter-itch” on our skin because in the winter, our legs would get dry patches, and our scalp would have a lot of what we thought was dandruff. She called it “growing dandruff.”

We didn’t know what it was. It wasn’t until college, when I was going to the doctor on my own, that I learned there was a name for it.

Even then, it was pretty mild and manageable. I didn’t give it much thought, and when I did have patches, I wore clothes to hide them. I had my own hair regimen, and that helped.

Everything changed for me at the beginning of the COVID-19 pandemic, around when I turned 40. I had a major flare-up and realized the full extent of psoriasis.

Suddenly, I had patches all over my body, and multiple types of psoriasis—not just the normal patches I was used to.

I had inverse psoriasis and  Guttate psoriasis, which looked like fine bumps. It was scary because I had never experienced it that way. My scalp was so bad, I lost quite a bit of hair at the crown of my head. Even though I knew I had a condition, I didn’t understand the extent of it until that major flare.

The pandemic, another medical issue, and other life stresses pushed my body into this major flare. That was when I had to rely on virtual visits with my dermatologist and learn more about what I was facing.

The Most Common Type of Psoriasis

BHM: You mentioned two different types. Can you explain the different types you’ve experienced?

Ayesha Patrick: Plaque psoriasis is what most people see, with raised, dry patches on the skin and scalp. Scalp psoriasis can look like dandruff, but it doesn’t go away easily. Psoriasis makes your skin regenerate much faster than normal, which is what creates the scales. That was especially hard because I lost most of my hair, which was very difficult to manage as a Black woman. Having to explain it to people was tough, too.

Can Psoriasis Be Mistaken For Other Conditions?

BHM: In the early stages, did you confuse psoriasis with other pre-existing marks, like birthmarks, or with other skin conditions?

Ayesha Patrick: When I was a kid, before I realized what it was, people thought it was ringworm, because the scales sometimes looked like that. It was hard because, as a kid, you don’t want people to think you have ringworm.

A lot of people would say, “Your skin is just dry, just use Vaseline, use cocoa butter.” You try those things, but they come back or don’t fully heal. It’s common for people to mistake it for something else.

She Knew She Had a Condition, But Was Not Formally Diagnosed Until Later

BHM: Were you ever misdiagnosed, or did you experience delays in your diagnosis because of how your symptoms appeared, especially considering your skin color?

Ayesha Patrick: I always knew I had a condition, so there was never a formal misdiagnosis by a doctor. The only misdiagnoses came from people making assumptions about what they thought I had, but not from medical professionals.

Finding a Community She Could Relate to

BHM: Once you were diagnosed, did your psoriasis look different on your skin compared to images you had seen in brochures or online? How was your research process as you tried to learn more and find others who could relate?

Ayesha Patrick: Because I knew what plaque psoriasis was, I was familiar with it on my skin. But with the inverse type under my breasts, that was completely new. Even the guttate type, the fine bumps, looked different too.

On my skin, the plaques are dark, gray, or sometimes purplish, whereas Google shows red, scaly patches.

Most information isn’t tailored for people of color; unless you search specifically for “psoriasis on Black skin,” you won’t see what it looks like.

Taking photos for my doctor helped me notice that my psoriasis didn’t look red—under my breasts, it looked dark. Online images and others’ descriptions of “red and scaly” didn’t match me. There’s an absolute lack of diversity in how psoriasis is represented in medical literature and online.

Navigating the Challenges of this Chronic Condition

BHM: What has been one of the most challenging aspects of your condition—socially, economically, or regarding barriers to care, like insurance and access to medications?

Ayesha Patrick: One of the biggest challenges was not being heard by my dermatologist. When I was finally able to go into her office, she looked at my scalp and told me to use medication and wash my hair every day.

I explained that as a Black woman with natural hair, I don’t wash my hair daily, and it wasn’t something I could do.

She didn’t seem open to understanding. My daughter was with me, and I realized this relationship wasn’t going to work.

I had to find a new dermatologist, which is always tricky because you have to build trust with someone new and hope they’ll create a treatment plan that works for you. I reached out to Facebook groups to find recommendations, looking for someone who would listen.

Thankfully, my healthcare through my job made access to care easier, but I learned about step therapy and other barriers many people face in receiving the medication that they need. Even though I didn’t experience all those barriers, knowing they exist made me more determined to help others advocate for themselves.

Education and Advocacy are Needed for Patients and Doctors

BHM:  Do you believe more research on people of color with psoriasis is needed? How can healthcare providers improve their care for these patients?

Ayesha Patrick: Absolutely, there should be more research. There are historic issues of trust that make it harder for our community to participate in clinical research. Still, unless we’re included, there’s a limit to what can be done specifically for us.

My new dermatologist—who is not a woman of color but works in a diverse practice—told me they didn’t see images of Black skin in medical school.

There’s an ongoing need to educate and show dermatologists how psoriasis and other skin conditions look on Black and Brown skin.

Our voices matter. Education, both in our community and in medical training, is crucial. Without that knowledge, we won’t get the early care and support we need. For example, I now have psoriatic arthritis, which causes irreversible damage if not caught early. The lack of awareness and education can make conditions progress faster. Collaboration, patient partnership, and education are essential.

Good Medicine Can Mean Many Things

BHM: Can you talk about some treatments that you have found helpful, both initially and now?

Ayesha Patrick: Prescribed topicals have been very helpful. Beyond that, I write and journal a lot because stress and anxiety can trigger flare-ups for me. Taking walks, reading, and making changes to my environment help, too.

It’s not all just medication. If a prescribed medication isn’t working anymore, there are always new options to consider—though it can be overwhelming to read about side effects online.

Changing my diet—reducing carbs and sugar, drinking less alcohol, even trying gluten-free—has also helped a lot.

Since I have psoriatic arthritis, movement is my medicine. Getting vitamin D naturally from sunlight helps too. Medicine can mean many things, not just prescriptions—playing music, caring for your mental health, and finding joy have all helped in my journey.

BHM: Lastly, could you tell us about your Sisters with Psoriasis support group? What inspired you, and what is its mission and impact? Also, do you have any advice for patients of color experiencing unexplained skin changes?

Ayesha Patrick: Sisters with Psoriasis came about when I was searching online for support and couldn’t find anyone who looked like me. I thought, “It’s impossible that no one else is experiencing this.”

One day, I felt called to start my group, so I created an Instagram page and a private Facebook group. I wanted to get support but also offer it to other women like myself. I also connected early on with the National Psoriasis Foundation (NPF), received mentorship, and worked as an advocate, which gave me the tools to create a safe space for others.

The Foundation made a real impact on my life. As the group grew, I expanded it into the Psoriasis Collective, bringing together patients, advocates, physicians, and others to share resources beyond the Facebook group.

I’m still involved with NPF as a mentor and patient research partner, where I am working on clinical trials and spreading awareness so that we can bring together more information and support for our community. My advice for any patients out there: your voice matters, and your feelings are valid. Trust yourself and know that.

Ayesha Patrick’s story underscores the importance of culturally competent healthcare, community, and self-advocacy for those living with psoriasis and other autoimmune diseases. By sharing her experiences and creating spaces like Sisters with Psoriasis, she continues to inspire others to raise their voices and seek the care they deserve. For more resources, support, or information about psoriasis, visit the National Psoriasis Foundation.

Resources:

National Psoriasis Foundation: Guttate Psoriasis

Cleveland Clinic: Inverse Psoriasis

Mayo Clinic: Plaque Psoriasis

National Psoriasis Foundation

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Lying on The Floor in The Locker Room Before A Final is Scary

One incident occurred before the 2016 Wimbledon doubles finals: “I was just lying on the floor in the locker room; Thank God, Serena went and got the doctor,” Williams said. “And I was able to eat, and start playing… bad luck for our opponents.”

They’re laughing, but it isn’t really funny. She is a Black woman who had to play through her pain because that is what we do. They won, but what did that cost her?

The Stats

Up to 70-80% women will be diagnosed with fibroids in their lifetime. But Black women are 2-3 times more likely to receive that diagnosis, and our symptoms will be more severe.

Was Her Anemia Sjögren’s or Something Else?

Williams believed that because she had been experiencing heavy periods and was in a state of constant anemia, it was caused by her autoimmune disease. In 2011, she withdrew from the U.S. Open, revealing for the first time that she had been diagnosed with Sjögren’s syndrome, an autoimmune disease that can cause joint pain.

Williams Didn’t Know the Extent of Her Fibroid Diagnosis

The Grand Slam Champion told Essamuah she didn’t know that her fibroid was the size of an orange. “One doctor told me, at the time I was like 37. Eh, this is part of aging, this is normal,” Williams explained.

A doctor told her her option was a hysterectomy. “I have never been so sad in my life. I had never been running to have kids,” William continued. “But to have that taken away was frightening.”

Williams Saw 12 Doctors Before She Found Someone Who Could Help

When the doctor recommended a hysterectomy, Williams began doing her own research. She found the NYU Langone Health Center for Fibroid Care, led by Dr. Taraneh Shirazian.

Dr. Shirazian said, “I think Venus’ story is a very common story. I think women do not get the care that they need. Even when she came to see me, she said, ‘I’ve seen a dozen other doctors.”

Williams then inquired why Dr. Shirazian recommended a surgical procedure—a myomectomy to remove her fibroids. “Because I know it will make you feel better,” Dr. Shirazian replied.

The tennis champ is now a year post-surgery. “I have been taking this time to rest and recover and be a happy person without fibroids.”

She has been training a bit, and the 45-year-old has not ruled out playing again. When asked if she believes having fibroids impacted her professional tennis career, she said, “I never had enough energy to play a real match the way I wanted to, of course it affected my results.”

Williams said, “You can be denied the best healthcare no matter who you are.”

Check out: TheWhiteDressProject.org

 

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“This is me doing a full smile by the way,” he said in the video, laughing in disbelief. “I can’t even laugh right, bro. Oh my God!”

Lil Nas X, who is 26, urged fans not to feel sorry for him. He was doing his best to joke his way through this.

People reported that fans, including Taraji P. Henson and Wanda Sykes, sent their well wishes. “In the comment section, Lil Nas X fans and some of his celebrity friends voiced their concern. Taraji P. Henson wrote, “Get well baby .” Wanda Sykes commented, “Get well, love. Sometimes your body tells you to sit down somewhere. Rest up..”

 

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A few days later, the rapper reported feeling better, according to a story on Billboard: “The Hotbox MC provided an update via his Instagram stories. “It’s much better, it’s much better,” he assured viewers, adding, “my eye still has to play catch-up. But like, but like I can give a genuine smile, so that’s good. I’m still winkin’ at mothaf–kers, but…. yeah.”

To date, Lil Nas X has not revealed his diagnosis, but there could be several causes (which fans and social media onlookers have speculated about:

Bell’s Palsy

According to the Cleveland Clinic, Bell’s Palsy temporarily weakens or paralyzes facial muscles. It occurs when the seventh cranial nerve is swollen or inflamed. Stress, a viral infection, autoimmune diseases, and other factors can cause this. Those with this condition develop a droopy appearance on one—or sometimes both—sides of their faces. The condition isn’t serious and will go away in a few months with or without treatment.

Ramsey-Hunt Syndrome

Some fans have speculated that Lil Nas X may be suffering from the same condition that Justin Bieber had, which can impact anyone who had chickenpox. According to the Mayo Clinic, Ramsey-Hunt Syndrome symptoms can present in two ways: a painful rash in and around one ear or facial weakness and paralysis on the same side as the affected ear.

Other things can cause facial paralysis, including a stroke, a brain tumor, Lyme disease, and an MS flare-up.

We wish Lil Nas X a continued recovery.

The post Lil Nas X Is Still Recovering After Experiencing Facial Paralysis appeared first on Black Health Matters.

The resources needed to combat displacement effects are difficult for the average person to obtain. Western North Carolina continues to try to undo the extensive damage from the catastrophic Hurricane Helene, which ravaged communities across Florida, Georgia, North Carolina, South Carolina, and Tennessee.

Our Neighborhoods as “Sacrifice Zones”

The Journal of Climate Change and Health reports that “Structural racism has resulted in sacrifice zones, which bear a disproportionate exposure to pollution sources resulting in health inequities” and “Communities of color are experiencing the syndemic of climate change, environmental injustice, and structural racism.”

Altadena has been affected by the Eaton fire, one of several wildfires in the area. This area has been a haven for Black families for generations. White flight in the area presented opportunities for residents who had trouble locating suitable housing due to redlining.

This tragedy has leveled Altadena, 13,690 acres. The flames have decimated businesses, homes, houses of worship, government offices, medical facilities, museums, and community centers. Many Black families are left with limited resources after watching everything they worked and sacrificed for vanish in a matter of hours. Many of these homeowners may have lost fire insurance coverage in recent months.

Some residents attempted to protect their homes by exposing themselves to air pollutants and other potential health risks.

These Climate Crises Bring Health Risks

Black people are particularly vulnerable to the health challenges presented by extreme weather events. A 2022 article published in the Journal of Current Environmental Health Reports stated that “Racially and socioeconomically marginalized communities in the USA have been shown to experience greater impacts from storm and flood events, extreme heat, and infectious diseases that are becoming more frequent due to climate change.”

The Environmental Protection Agency released a report in 2021 that identified that “Black and African American individuals are 40% more likely than non-Black and non-African American individuals to currently live in areas with the highest projected increases in mortality rates due to climate-driven changes in extreme temperatures.”

The Impact on Mental Health

Hurricane Helene claimed the lives of hundreds of people and displaced thousands of others. The United States Census Bureau reported that more than half a million North Carolinians lived under a disaster declaration following Helene’s impact. These crises can affect the quality of one’s mental health.

Losing your home is a legitimate traumatic experience that sticks with you.

Rapper Meek Mill expressed sympathy for those in the Los Angeles area in a post on X. The Philadelphia native also used the platform to reveal his own experience with fire-related trauma. “Prayers to la ???????????????? I never knew about fire trauma until my house caught on fire…. I was smelling fire in my sleep, jumping up for 3 years… I didn’t know that type of trauma existed, so I was just dealing with it as a kid!”

A January 2024 article in Current Opinion in Psychiatry stated that the “Prevalence of anxiety and mood disorders, including posttraumatic stress disorder, appear to be higher for displaced peoples.” In 2021, The Journal of Affective Disorders Reports found that “higher exposure to traumatic experiences and increased post-migration stress have been identified as risk factors for mental disorders in forcibly displaced populations.”

Even years later, it can have a lasting effect. Megan Collins, a licensed marriage and family therapist and art therapist in Beverly Hills, California, spoke about what someone experiencing displacement due to a climate crisis might feel. “It is a trauma to instantly lose everything that you have known. That is your sense of stability. That is a core basic human need that comes before everything,” she told Black Health Matters.

Collins is currently offering free therapy sessions to those suffering from the effects of the Los Angeles wildfires.

“When you’re a traumatized person, those traumas are stored in your body,” said Collins. This can show up as being easily triggered in situations where uncertainty is present.

“You might have long-term difficulty with remaining fully present in your life. It may be hard to socialize and have relationships. It may be hard to maintain work,” added Collins. “Trauma can cause you to withdraw and isolate,” she continued. “It really impairs a relationship.”

Forcible displacement interrupts some community-building activities that anchor the average person’s life. There are no dance recitals or parades. Setting up in a new place does not instantly eliminate the hurt of losing one’s home. Collins explained that those enduring the trauma of displacement will still need support once their struggles are no longer a trending topic. “This crisis isn’t solved by simple solutions,” she said. “It’s going to take these people a really hard time, and they’re going to need a lot of support in the long term.”

The Potential Long-Term Health Impact

Climate crises can prevent people from receiving their medication refills. Wildfires can create potential physical health issues. Their impact can aggravate chronic conditions or cause new ones. Those with autoimmune conditions or at high risk of developing them can be heavily impacted by the low air quality they cause.

According to the Journal of Rheumatic & Musculoskeletal Diseases, “Long-term exposure to air pollution was associated with [a] higher risk of developing autoimmune diseases, in particular rheumatoid arthritis, CTDs, and IBD,” and “chronic exposure to levels above the threshold for human protection was associated with a 10% higher risk of developing IMIDs.”

The Autoimmune Reviews Journal stated that “smoke has been found to play a pathogenic role in certain autoimmune disease as it may trigger the development of autoantibodies and act on pathogenic mechanism possibly related with an imbalance of the immune system,” and “Not only cigarette smoke but also air pollution has been reported as being responsible for the development of autoimmunity.”

Tropical cyclones and hurricanes can lead to poor health outcomes. “Storm-driven flooding contaminates environmental, recreational, and drinking water sources,” and “extreme weather events have been associated with gastrointestinal illness or specific outbreaks,” according to a 2023 article in the Journal of Emerging Infectious Diseases. Climate crises can lead to the spread of vector-borne pathogens, airborne pathogens, and nosocomial infections.

“Extreme precipitation forms standing flood water containing contaminated runoff, sediment, debris, and waste harboring fecal coliforms and enteropathogens. These dangerous conditions are partially caused by inadequately functioning water systems and overflowing septic tanks,” according to the American Society for Microbiology.

Collins noted that there can be situations where a person’s body reacts to the stress of losing their home to a climate crisis. “Our mental health impacts our physical health and vice versa, so you may see people that end up with some type of autoimmune diseases or other physiological symptoms as well,” she said.

The post The LA County Wildfires & the Trauma of Sudden Displacement appeared first on Black Health Matters.

Thyroid Disease Impacts More Women Than Men

The American Thyroid Association reports that “more than 12 percent of the U.S. population will develop a thyroid condition during their lifetime” and “up to 60 percent of those with thyroid disease are unaware of their condition.” The risk for thyroid complications is even higher in women. A 2021 article in the Journal of the American Medical Association stated that “thyroid dysfunction is more common in women than in men.” That dysfunction can be complicated by the inadvertent masking of symptoms because, as the same article noted, “For women, the profound physiologic changes associated with different life stages affect the timing of presentation of thyroid disease.”

Our Community Faces a Unique Set of Challenges

Interventions addressing poor thyroid health can range from oral prescription medication to surgical procedures. Hormone replacement therapies are an option in some instances as well. Black people face unique challenges in maintaining proper thyroid health.

“Disparities continue to exist in the diagnosis and treatment of thyroid disease, which affects an estimated 20 million Americans, with patients of racial and ethnic minorities experiencing worse outcomes for both malignant and benign thyroid disease,” according to the Office on Women’s Health in the Office in the U.S. Department of Health and Human Services.

A study published in The Journal of Clinical Endocrinology and Metabolism reported that “the incidence of thyroid cancer has been rapidly increasing over the past 30 years,” and “Black patients were on average older at the time of diagnosis and had higher comorbidity scores.”

Overactive Versus Underactive Thyroid Conditions (and their symptoms)

Thyroids can be overactive and underactive. Both can negatively impact one’s health and are frequently attributed to the presence of autoimmune diseases like Graves and Hashimoto’s. Thyroid issues can also complicate family planning.

Hyperthyroidism is an overactive thyroid condition. The National Institute of Diabetes and Digestive and Kidney Diseases defines it as a condition “when the thyroid gland makes more thyroid hormones than your body needs.”

Hyperthyroidism can be challenging to diagnose due to its symptoms overlapping with other conditions. This can contribute to deadly delays in treatment and worsen outcomes. “A hyperthyroidism diagnosis can’t be based on symptoms alone because many of its symptoms are the same as those of other diseases. That’s why your doctor may use several thyroid blood tests and imaging tests to confirm the diagnosis and find its cause,” according to the National Institute of Diabetes and Digestive and Kidney Diseases. According to the Lancet, “Commonly reported symptoms are palpitations, fatigue, tremors, anxiety, disturbed sleep, weight loss, heat intolerance, sweating, and polydipsia.” It can also lead to diarrhea.

Sweating and heat intolerance can be confused for symptoms of menopause or perimenopause in some cases, wasting valuable time that could be used to treat thyroid issues on misdiagnosis.

Hypothyroidism occurs when the thyroid cannot function at the level the body needs. The Office of Women’s Health reports that symptoms of hypothyroidism include cold intolerance, constipation, loss of muscle functionality, depression, fatigue, dry skin, abnormal heart rate, diminished vocal capacity, and heavy menstrual bleeding. It is equally difficult to diagnose.

If you suspect that you might be having thyroid issues. Give your doctor some insight into some of your symptoms:

• Symptom: Temperature Sensitivity

If your new satin shirt is soaked through while everyone surrounding you is bone dry, that could be a sign that you have an overactive thyroid. Excessive sweating and heat sensitivity are common symptoms associated with hyperthyroidism. Shivering while everyone is enjoying a cool breeze might indicate hypothyroidism, as this thyroid issue can come with an extreme sensitivity to the cold.

•  Symptom: Heart Issues

Heart palpitations could be a symptom of an overactive thyroid. A heart rate that is too slow might signal that your thyroid is underperforming. If you suspect you have symptoms, you can monitor your heart rate on your own and bring evidence to your doctor, but ultimately, they will be the best method of confirming your heart health and whether it intersects with any thyroid challenge.

• Symptom: Impact On Your Mental Health

Overactive and underactive thyroid have the potential to impact a person’s mental and emotional health.

A sleepless state of constant worry that feels like generalized anxiety could be a sign that your thyroid is in a hyper state. The deep fog of depression that you are unable to climb out of could prove that your thyroid is low-functioning and sinking your hormonal health. Both of these invisible symptoms are dangerous. Communicate honestly with your healthcare provider and loved ones about how you are feeling so that you can get the help you need and deserve.

The post The Difference Between an Underactive & Overactive Thyroid 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.

Three months later, she experienced several complications, including necrosis of her remaining breast tissue and vaginal cuff dehiscence. This rare but potentially life-threatening tear can happen after a hysterectomy. After barely surviving that experience in 2017, Madison was diagnosed with fibromyalgia, autoimmune disease, chronic pain syndrome, chronic fatigue syndrome, and a host of other maladies, including anxiety and depression.

An Awful Encounter At An Emergency Room

Her conditions forced her to drop out of her doctoral program, which resulted in the multi-disciplinary artist also losing her health insurance. Nonetheless, Madison sought help at a local emergency room when she started to feel excruciating pain in her legs, leaving her unable to walk. While in triage, a nurse attempted to take her blood to try to figure out what was going on.

“I explained that I had several chronic pain conditions that made getting a blood draw more hypersensitive and that I had small, rolling veins,” explains the 43-year-old.

“When she kept missing my vein, and I would have a response, she grabbed my arm even harder and told me, ‘That doesn’t hurt you.’

The situation escalated once Madison took out her phone to record the encounter, a practice she says she has done before because “I’ve learned that I’m not believed unless I have evidence.” Madison recounts the nurse becoming so outraged that she reached over her body to grab the phone away, and that’s when she was told, “You’re just trying to get pain drugs. You’re a drug seeker.”

Soon after, the nurse called the police. If it wasn’t for her husband (who is white and was in the room with her), an officer (who happened to be a person of color), and a calmer E.R. doctor, Madison firmly believes that she would have been arrested that day.

“That experience left me feeling dehumanized, fearful to seek care, traumatized, and depressed because people think I don’t experience pain.”

Who Started the Black People Don’t Feel Pain Narrative?

Although it may seem like Madison’s story is the extreme, it’s not. There is a long history in the United States of pain inequity, where Black patients do not receive adequate measures to properly and fairly assess and treat their pain symptoms. In the 19th century, a wealthy white plantation owner and respected physician, Dr. Thomas Hamilton, did his best to prove that Black bodies functioned differently than white bodies, namely that Black skin was, in fact, “thicker” and thus more impervious to pain. Hamilton’s experiments were inhuman and influential enough to lead to many other obnoxious fallacies based on racist ideologies.

In 1840, Dr. James Madison Sims performed obstetric and gynecological procedures on several enslaved girls and women in Alabama without anesthesia while his colleagues observed and took notes. These theories may have been constructed centuries ago, but they are still perpetuated today by practicing healthcare professionals of varying backgrounds.

Dr. Uché Blackstock is the founder and CEO of Advancing Health Equity and the author of “Legacy: A Black Physician Reckons with Racism in Medicine.” In her book, she recounts her experience of receiving a false diagnosis during her first year of medical school. After her third visit to the E.R., she was treated for an emergency appendectomy and infection resulting from a rupture.

Dr. Blackstock says she understands racial bias in medicine from both patient and physician perspectives.

“I was told I didn’t seem to be in that much pain,” says Dr. Blackstock. “It’s an experience that Black patients and other patients of color often have when they seek care for an issue that involves pain, and they feel like they are not listened to, and their concerns are minimized, or they’re simply just dismissed.”

The Believe My Pain Project

Dr. Blackstock has partnered with the Advil Pain Equity Project, a multi-year collaboration with Morehouse School of Medicine and BLKHTH, to review the impact of racial bias in pain management. Several Black patients shared their personal stories of having an underlying diagnosis that was either missed or delayed, resulting in both emotional and physical harm. The testimonials, while frustrating, also allow room for hope.

Morehouse School of Medicine is offering two new courses to educate the next generation of doctors on how to better treat Black patients in pain.

Conversations have already started with other medical schools to follow suit. Plus, Black patients are encouraged to learn new ways to better advocate for themselves with the tools they can access at believemypain.com.

In a recent study, Advil surveyed 2,000 Americans and found that 83% of Black people said they have had a negative experience seeking help managing pain. “The numbers were overwhelmingly reinforcing that the Black community was where we needed to lean in and help drive awareness and make a difference as it relates to Black pain and Black inequities,” said Stacey Harris, vice president of marketing U.S. Pain & Rx to OTC Switch at Haleon, the consumer health care company that produces Advil.

“We need to educate the next generation of healthcare professionals about the issue, how to recognize it, and how to overcome it. That’s why it was critically important for us to partner with a medical school like Morehouse School of Medicine and BLKHLTH, who also helped develop tools to elevate patients’ engagement and awareness, all for better outcomes with healthcare professionals.”

In Pain Alone On a Gurney For Eight Hours

Chelsea Parker is optimistic that the Advil Pain Equity Project will make a difference in how she and other Black patients are treated in the future. Parker was diagnosed with sickle cell disease at three years old and has found ways to manage the rollercoaster of physical and emotional pain that comes with her condition. Now, the 31-year-old social worker knows what to expect when in crisis.

The excruciating cramps in her joints, mainly her thighs and legs, and sometimes in her chest, can be overwhelming.

This was the case in August 2024 when her brother drove her to her local emergency room in Michigan. Instead of receiving care, she was ignored and left alone on a gurney in the hallway for nearly eight hours. “I would see a nurse or doctor now and again, but they didn’t give me water, an IV, or any fluids and eventually only offered me two milligrams of pain medication,” said Parker.

“I fell asleep, and when I woke up, I was down on the other side of the hallway. No one asked how I was doing or if I was ok.”

Parker claims it wasn’t until her mother and mentor arrived that she felt like her symptoms were finally addressed. Nonetheless, she doesn’t plan ever to return there. The next time she’s in crisis, she’d rather travel to a hospital further away. “They could have had more compassion for what I was going through,” says Parker. “Even though they can’t see it, I was showing that I was in pain. And yet, it didn’t matter.”

The Truth, Reconciliation, Healing & Transformation Research Project

In addition to the Advil Pain Equity Project, the American Medical Association (AMA), one of the oldest and most influential professional organizations for physicians and the science of medicine, has teamed up with the Harvard Kennedy School’s Institutional Antiracism and Accountability (IARA) Project for the “Truth, Reconciliation, Healing, and Transformation” (TRHT) Archival Research Project. For the first time, the AMA will fully open its records from the last 177 years for historians to scrutinize the historical roots of racial disparities, hoping that doing so will lead to groundbreaking policies and changes in medicine.

Research Associate Ángel Rodriguez. is leading part of the project under Professor Khalil Gibran Muhammad, founder and director of the IARA Project. “We’re very excited to take the next 24 months to do something no one has done before,” says Rodriguez. “It’s also important that our scholarship reflects the highest quality and rigor of our analysis to include real evidence to back up what we will ultimately share. We want to be able to make specific insights and recommendations.”

Rodriguez is confident that the TRHT Archival Research Project will help explain why some health inequities persist today.

The team wants to create a deeper understanding and context around some of these disparities based on historical evidence, which will lead to changes in policies and practices that better protect Black patients in pain.

Boldly stated, American medical personnel have failed Black patients in many ways. Healing has to come from both sides. The burden isn’t just on the patients to advocate for themselves; it’s also on the healthcare system to change how doctors do medicine.

Patient-centric care is a start where physicians, nurses, and others can use more inclusive language with Black patients that unpacks medical jargon and acknowledges that Black patients can be the experts of their own experiences.

The hardest part, however, may be for practitioners to finally acknowledge their own implicit bias and internalized negative beliefs about Black people. Look at how those beliefs impact the way they diagnose and treat patients. Maybe only then can we treat pain fairly for everyone, regardless of race.

Wendy L. Wilson is an award-winning journalist who has written for BET.com, theGrio.com, Ebony Magazine, Jet Magazine, and Essence Magazine.

The post Why Black Patients in Pain Are Overlooked 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.

That’s why I compiled a list of the top popular nutrition myths you’ve probably heard and may even believe. I’ve searched the internet for reputable sources to find out if there’s any scientific evidence to back them up. Are you ready to separate fact from fiction and debunk these myths once and for all?

Watch Out! What you are about to read may be hard to believe.

Myth #1: Eating Eggs (Yolks) Will Kill You

Sound familiar? We’ve long been told that eating eggs, especially the yolks, causes high cholesterol, which can lead to cardiovascular disease and death. Where did this come from? The American Heart Association 1968 warned us to eat no more than three whole eggs per week to avoid consuming dietary cholesterol, which was thought back then to cause high cholesterol.

It has taken half a century of scientific research to understand the truth: Consuming high levels of saturated and trans fats is to blame for high cholesterol, not eggs.

The National Institute of Health refers to this myth as “an outdated hypothesis slowly put to rest,” concluding, “Half a century of research has shown that egg and dietary cholesterol intake is not associated with increased cardiovascular disease risk.

Most health promotion agencies around the world have dropped egg restrictions altogether.

FACTS: Eggs are among the most affordable, nutrient-dense, complete protein sources. They are full of vital nutrients that promote healthy eyes, brain, and nerves, as well as essential vitamins like A, B, and D. Omega-3 fatty acids are widely proven to lower our risk of heart attack and death.

According to Scientific American, hens fed flaxseed yield these eggs.

WHAT TO WATCH OUT FOR: While eggs are considered healthy, how they’re cooked and what we eat alongside them could have perpetuated their notoriously Bad reputation.

Foods like bacon, sausage, and ham are traditionally enjoyed with eggs, and using butter and oils in their preparation has most likely tainted the health benefits of our perfect protein.

The American Heart Association writes, “Decades of science have proven that saturated fats can raise your “bad” or LDL cholesterol and put you at higher risk for heart disease.

Myth #2: We need Juice Cleanses to Detox the Body & Jumpstart Weight Loss

The idea that juicing rids your body of toxins and cleanses your vital organs sounds fantastic and entirely believable. However, it’s just not true. Adding more fruits and vegetables to our meals and snacks has proven health benefits. There is little to no scientific evidence to support the idea that juicing your daily fruits and vegetables cleanses your body more than eating them in whole form and staying adequately hydrated throughout the day. That is, I found no valid long-term research to confirm this claim.

I get it. Drinking your fruits and vegetables may seem easy to get in all your daily vitamins and minerals. I often treat myself to a delicious carrot, beet, ginger, celery, and fresh apple juice. I know that juice is healthier than frozen sangria.

But just because it tastes and feels good doesn’t mean that juicing, pulverizing much of the healthy fiber, and destroying the essential vitamins and nutrients in fruits and vegetables is necessarily healthy or necessary to cleanse the body. 

FACT: Our liver and kidneys work naturally to filter out toxins without any help from juices. Unfortunately, there’s more scientific evidence of drawbacks associated with various “detoxes” and “cleanses” than the purported health benefits such as improved digestion, energy boost, and reduced inflammation.

Juices primarily consisting of fruits add more sugars and calories than you could eat the whole version of in a day. Longer juicing may cause more harm than good without protein to stabilize blood sugar spikes.

Liver and cancer specialist and surgeon Thomas Aloia, M.D., explains the importance of a healthy liver: “Detoxifying the normal things we eat, breathe, and ingest is part of its job and keeps us alive.”

So, how do we care for the liver so it functions properly? Dr. Aloia urges us to maintain a healthy diet and avoid putting extra demands on this vital organ.

He warns, “Don’t pack your liver full of fat, sugar, or alcohol, so the (detox) machine keeps doing its job well.”

If Whole Foods like fruits and vegetables and a plant-based diet centered around lean protein sources like legumes, nuts, and seeds  instead of animal products is what you’re looking to consume with these detoxes, cleanses, and juices, he says, “you will likely get all the benefits such programs offer.”

WHAT TO WATCH OUT FOR/WARNING: Juicing as a meal replacement results in inadequate calories and, most importantly, reduces the fiber required to absorb the nutrients from whole foods. This way of drastically cutting calories may result in weight loss. However, eliminating healthy protein sources could result in losing lean muscle mass and missing out on vitamins and nutrients to fuel your day with energy.

That’s not all; if weight loss is your goal, you may gain more weight when you return to your regular intake of calories and processed food.

Myth #3 Eating Soy Increases Risk of Breast Cancer

It was hard to understand that consuming soy products had been associated with cancer, especially considering that soy is the most popular plant protein, the central component of several Asian cuisines, and is widely used in diverse populations worldwide.

Soy milk emerged in Europe and the US in the 1980s, but it wasn’t until the ’90s that I noticed it. I vividly remember when everyone switched to soy milk in their coffee! Silk, a popular brand of soy milk products, was everywhere.

How could this healthy protein alternative to cow’s milk cause breast cancer when so many populations, including vegetarians, consumed so much of it? Something didn’t sound right. A friend of mine warned me with some urgency about the danger of soy.

Since her mother had recently lost her battle with breast cancer, I was convinced it had to be true! But was it? I needed to know that this claim was scary even though I didn’t like the taste of it in my coffee and never had a taste for tofu.

The confusion stems from a few misinterpretations of scientific evidence in the past. Breastcancer.org attributes older studies that were performed on rats suggested that large doses of isoflavones found in soybeans stimulated breast cancer cells to grow in Petri dishes. However, there is no evidence to suggest the same effect in people.

FACT: Harvard researchers confirm soy foods are rich in nutrients, including B vitamins, fiber, potassium, magnesium, and high-quality protein. Soy is a complete protein containing all nine essential amino acids the body cannot make alone.

According to the American Cancer Society, there is growing evidence that eating tofu, tempeh, edamame, miso, and soymilk may lower the risk of breast cancer.

Myth #4 Fresh Produce is Healthier than Frozen or Canned Versions

It may surprise you that although packaged produce is technically processed, its effects on nutritional value are minimal.

The National Institute of Health reports, “Research has revealed that frozen fruits and vegetables can have just as many vitamins —and sometimes more—than fresh.

While freezing may impact the texture of your fruit when it thaws, fresh fruit retains its natural texture better.

For those who do not have access to fresh produce or proper storage provisions, frozen or canned fruits and vegetables are a convenient and healthy alternative.

However, if you prefer the taste of fresh produce, then fresh may be the only way to go.

FACT:  According to the American Heart  Association, frozen and canned options can be healthy alternatives to fresh produce, the operative word being ‘can.’

In fact, according to UCLA Health, it is well documented that canned and frozen fruits and vegetables are commonly processed within hours of being harvested, which helps preserve their nutrients.

Smart Shopping Tips: It is essential to choose carefully and pay attention to the labels to avoid added sugars like “heavy syrup” or high sodium concentrations. Choose packaged varieties, such as fresh fruits and vegetables, free of salt, syrups, and creams, and season on your own.

WHAT TO LOOK OUT FOR: Follow the directions on the package of frozen varieties to avoid overcooking them to the point they lose color or shape. If you cannot identify the vegetable, some nutrients may have been lost along the way.

To be clear, it is possible to encounter a slight shift in the nutritional value of frozen produce. Tish Food Center says, ” Water-soluble vitamins, like vitamins C and B, may leach during the initial blanching process. Also, storing produce in the freezer for too long may cause freezer burn in which cell walls rupture, resulting in a noticeable change in color, flavor, and texture.” The fact remains, however, that adequately stored frozen fruits and vegetables make enjoying produce year-round.

Myth #5 Gluten-Free Foods are Healthier

If you’ve heard about gluten, you may be aware of it since so many products are suddenly made without it. But what exactly is it?

Gluten is a protein in grains like rye, wheat, and barley. It’s common in foods like bread, cereal, and pasta. Celiac disease is an inherited, diagnosable autoimmune disease estimated to affect 1 in 100 people worldwide.

When someone with Celiac disease eats food containing gluten, their bodies trigger an immune response that attacks the small intestine, causing damage and malabsorption of nutrients.

FACT: Gluten-free foods are NOT healthier. The opposite may be true: “Gluten-free foods are commonly less fortified with folic acid, iron, and other nutrients than regular foods containing gluten,” according to Harvard researchers.

They have found that gluten-free foods contain less fiber but more sugar and fat and cost more. Further research has seen “a trend toward weight gain and obesity among those who follow a gluten-free diet (including those with celiac disease).”

There is no compelling evidence that a gluten-free diet will improve health or prevent disease if you don’t have celiac disease.” This means avoiding gluten is unnecessary if you can eat gluten without trouble.

These are just the first five; we have 15 more to go. Stay tuned for part two.

This story is made possible by an educational grant from Novo Nordisk.

The post Nutrition Myths We Still Believe Part 1 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.

What Is Hidradenitis Suppurativa?

Hidradenitis Suppurativa (HS) is a condition that occurs when painful lumps and bumps begin to form under the skin, according to the Mayo Clinic. When HS appears, it typically flares in places where skin rubs together. Common areas, including the armpits, groin, breasts, and buttocks, often occur where hair follicles become blocked and inflamed.

The flares are compounded when the bumps or abscesses burst and blood and pus leak. HS bumps may heal slowly and become recurring. As a result, those with the condition could experience scarring. When the abscesses recur in the same area, the scarring may progress to tunneling when the sinus track beneath the skin is filled with pus.

We spoke with Dr. Kenyatta Mireku, a board-certified dermatologist, who provided insight on HS and common misconceptions.

BHM: What do dermatologists look for to reach an HS diagnosis?

Dr. Mireku: We look for recurrent painful lesions such as nodules, abscesses, and tunnels in intertriginous (skin folds) and creased areas such as the axillae (underarm), buttocks, breasts, and groin.

BHM: How do dermatologists classify HS regarding its severity?

Dr. Mireku: We use  something called the Hurley stages:

• Stage 1 – solitary or multiple, isolated abscess formation without scarring or sinus tracts.
• Stage 2 – recurrent abscesses, single or multiple widely separated lesions, with sinus tract formation
• Stage 3 – diffuse or broad involvement, with multiple interconnected sinus tracts and abscesses.

BHM: Are there any things that specifically contribute to people developing HS?

Dr. Mireku: Yes, HS is more commonly seen and more challenging to treat in those who are overweight and those who smoke. HS is also more commonly seen in those with a history of inflammatory disorders such as cystic acne and pilonidal cysts and those with scalp disorder, dissecting cellulitis.

In addition, there is likely a genetic predisposition as approximately 40% of patients with HS report a family history of the disease in a first-degree relative.

BHM: Do you have any thoughts regarding why Black people are more prone to HS diagnoses?

Dr. Mireku: Honestly, the exact reason isn’t entirely clear yet. For sure, research has shown that there are higher rates of autoimmune disease and obesity, which are two known associations of HS, in black patients. These may be contributors; HS also seems to have a genetic predisposition.

BHM: How can we promote more healthy conversations about HS?

Dr. Mireku: I think awareness is critical. Many patients are either embarrassed or believe that they have a hygiene issue. Because of this, I feel that the incidence of HS is under-reported. Many people live with it for years before being diagnosed.

Patients need to understand that they have done nothing wrong, are not contagious, and have nothing wrong with their personal hygiene.

Additionally, they shouldn’t feel alone. There are things we can do to help.

Treatment Options

The HS Foundation has provided information about a few approaches for treating HS, including:

• Topical medicines, such as washes and medicines, are applied to the skin’s surface.
• Systemic medicines and pills can help reduce inflammation, reduce bacteria, and boost the immune system.
• Procedures, depending on the severity of one’s HS, laser treatments, lancing, minor surgeries, and more extensive surgeries can be beneficial for reducing inflammation and restructuring the skin.
• Complementary and alternative medicine (CAM) targets one’s diet, nutrition, and supplements and promotes mind and body techniques.

Treating HS looks different for everyone, and for many, a combination of treatments will be used, and specialists may be involved as well. Those living with an HS diagnosis or those who think they may have HS should visit their healthcare providers.

The post Hidradenitis Suppurativa: Removing the Stigma and Understanding the Condition 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.

Denise N. Bronner, PhD Director Diversity, Equity and Inclusion at Jansen, and JoBaris D. Swain, MD, MPH Medical Executive, Cardiovascular & MetabolismJanssen Scientific Affairs, ILC of Johnson & Johnson discussed the need for “True Representation In Cardio Research” at the 2023 Black Health Matters Summit. They were introduced by actor and producer James Pickens (Grey’s Anatomy). According to a study published by the National Kidney Foundation, “rates for African Americans remained 20% higher for heart disease and 40% higher for stroke.”

Another study published by the U.S. Department of Health and Human Services found that “African Americans were 30 percent more likely to die from heart disease than non-Hispanic whites.”

How has a lack of accurate representation in cardio research impacted the Black community?

“Representation is very important,” said Dr. Swain, noting that biological differences are not accounted for when studies are not diverse. Dr. Bronner shared how crucial it is for Black people to be considered in the planning phases of treatment development. She declared that exclusion from the baseline can result in disparities in “efficacy” and “effectiveness.” “The only time that we get included is when the drug has already been approved,” she said. “That’s when you start to see the adverse events or side effects starting to come.” Inclusion at that stage precludes preventive safety measures in some instances. “Things could have been identified if we were being pulled into the study,” she continued. Dr. Swain remarked on the lack of available training materials for diagnosing psoriasis on Black skin. Studies have found that this chronic and complex autoimmune disease is associated with many cardio patients. According to Cureus, “Many studies have shown an increased risk of cardiovascular morbidity in patients with psoriasis.”

What are some myths associated with cardio care?

“Many of us have probably heard that cardiovascular disease only happens in old people, and a lot of times, you know, when you go to certain screening events, they’ll, you know, start looking at people 65 and older. However, we’ve now learned that cardiovascular disease can affect individuals of all ages, even children, so we have to be mindful of our activity, diet, and exercise,” he continued.

“A second myth that often we have is that if I don’t have symptoms, I have a healthy heart,” said Dr. Swain, who described witnessing the sudden onset of severe symptoms during a telehealth session.

“We have patients who come into the emergency department, and they’ve been completely healthy in their mind. They’ve not had chest pain or any other side effects or symptoms, and all of a sudden, they come in, and they may have gone and had their blood pressure checked. Then they start having chest pain, and then they realize that they’ve had a full-on myocardial infarction, and often it comes as a complete surprise,” Dr. Swain continued. The older man clutching his left arm in sudden distress is the troupe most people are familiar with when they think of a heart attack. But that popular image is not the whole story of how cardio events occur.

“We often think that men are the only ones who have cardiovascular disease, and we understand men often are at greater risk, but cardiovascular disease affects men and women,” said Dr. Swain.

He revealed that these events in women can be associated with jaw pain. They can also appear to be “asymptomatic or atypical.”

Swain pointed out how cultural norms can convince Black women to ignore symptoms that might be their overall cardio health. “As a culture, you know, we grow up with aches and pains, and it’s straightforward for us to say, oh, I woke up like this, and kind of, you know, write it off as something that’s a part of our natural everyday experience.

Take Action!

• The session provided valuable and practical tips for managing your cardiovascular health.
• Take control by educating yourself and others about cardiovascular issues.
• Familiarize yourself with the myths associated with cardio so you can fight misinformation
•  Don’t assume the ache or pain you are feeling is normal.

As Dr. Swain said, “If you feel something, say something.” Start the conversation. Ask the questions. Listen to your body. Contact your healthcare provider and fight for your cardiovascular health.

This session was presented by Janssen

The Panelists: Denise N. Bronner, PhD Director Diversity, Equity, and Inclusion in Clinical Trials – Immunology Portfolio Jansen

JoBaris D. Swain, MD, MPH Medical Executive, Cardiovascular & Metabolism Janssen Scientific Affairs, LLC of Johnson & Johnson

The post Healing Hearts: True Representation in Cardio Research appeared first on Black Health Matters.

Psoriatic arthritis (PsA) is an autoimmune condition and a common complication of psoriasis.^2,3 It occurs in 10-20% of people with psoriasis, but you may develop PsA without noticing or being diagnosed with psoriasis.^4,5 While PsA is less common in Black Americans than whites, it may be more difficult to identify skin symptoms in Black patients.² Symptoms may also be more severe.² PsA has similar symptoms as other types of arthritis such as osteoarthritis and rheumatoid arthritis.⁴ Complete this screening tool to help assess if you may have PsA.

Identifying Psoriatic Arthritis

PsA may be caused by environmental or genetic factors. Other risk factors include family history, age (30-50 years old), obesity, and smoking.⁶ The time of onset and severity of PsA symptoms may vary.⁵ Common areas of involvement include the joints, spine, and areas where a tendon or ligament attaches to a bone.⁶

Common symptoms of PsA include

• Morning stiffness
• Tiredness
• Skin rash that may appear anywhere on your body and may appear to be a purplish-brown color on darker skin complexions
• Changes to the color, thickness, or texture of your fingernails
• Painful swelling in your finger and toes that may resemble sausages
• Stiff and painful joints that may be red, hot, and swollen
• Pain, redness, and inflammation in your eyes
• Pain and tenderness at the back of the heel and sole of the foot

It is important to see a specialist if you suspect you may have PsA or if you are experiencing symptoms.

Communicating Your Concerns

You may feel anxious about speaking with your healthcare provider about your concerns, but know that you are making the best decision for your health. You should be prepared to discuss your symptoms and go into detail about what you are feeling and where.⁵ You may find it helpful to use a diary or journal to keep track of your symptoms and share with your provider. Advocate for yourself and ask questions. If you’re feeling uneasy, ask more questions. Your provider can help you better understand more about the disease, your treatment options, who you should follow up with for your care, and how to cope. There are also online resources such as the Patient Navigation Center that you can take advantage of.

Diversity in Psoriatic Arthritis Research

Diversity in clinical trials is important to help us understand how different groups may respond differently to treatment.^3,7 Unfortunately, there is a lack of representation and PsA clinical trial participation among Black Americans.⁷ More research is needed to determine if and how PsA disproportionately impacts patients of different races.⁸ When you participate in a clinical trial, you are taking a bold step towards progress. Participating in a clinical trial can help you learn more about your condition while receiving expert care. If you or a loved one has been diagnosed with PsA and have not been treated with any medications recently, you may be eligible to participate in a clinical trial. If you are interested in learning more about if you may be eligible for PsA clinical trial participation, visit BMS Study Connect.

Funded by Bristol Myers Squibb.

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References:

1. National Psoriasis Foundation. About Psoriasis
2. Arthritis Foundation. Arthritis in the Black Community
3. BIPOC Patient Voices: Living with Psoriasis and Psoriatic Arthritis
4. CDC. What is Psoriasis?
5. National Psoriasis Foundation. About Psoriatic Arthritis
6. Psoriasis and Psoriatic Arthritis: What’s the Connection?
7. Lack of Diversity in Clinical Trials of Psoriatic Arthritis
8. Promoting Diversity, Equity, and Inclusion for Psoriatic Diseases

The post Psoriatic Arthritis: What You Need to Know appeared first on Black Health Matters.

What Is Psoriasis?

Psoriasis, an autoimmune disease primarily affecting the skin, does not discriminate by race or ethnicity. It affects millions of people worldwide, including individuals within the Black community. Yet, the discussion around psoriasis often overlooks the unique challenges that Black individuals face in diagnosis and treatment. A deeper understanding of how psoriasis impacts this group can lead to improved outcomes and better patient care.

How Does Psoriasis Affect Black Patients Differently?

The first hurdle in the path to effective treatment is diagnosis. Psoriasis presents differently in darker skin tones, which can lead to misdiagnosis or delayed treatment. In people with lighter skin, psoriasis tends to show up as red, inflamed patches covered with silvery scales. However, in people with darker skin, including Black individuals, these patches may appear purple, brown, or a darker gray. This difference in manifestation can often confuse, leading to incorrect diagnoses like eczema or fungal infections.

Moreover, the scale associated with psoriasis might be less noticeable in the Black community due to the unique properties of black skin. These differences can result in the disease’s under-recognition, contributing to disparities in disease management.

Additionally, the psychosocial impact of psoriasis should not be underestimated. Psoriasis lesions can cause feelings of embarrassment or anxiety, impacting an individual’s quality of life.

Treatment Of Psoriasis In Black Patients

Treatment of psoriasis in Black individuals can be uniquely challenging. The potential for post-inflammatory hyperpigmentation or hypopigmentation, where skin patches become noticeably lighter or darker than the surrounding skin, is a major concern. Many of the commonly prescribed treatments for psoriasis, such as topical corticosteroids, have been linked with these pigment changes. Thus, healthcare providers must consider the risk of altering skin pigmentation when developing a treatment plan for Black individuals with psoriasis.

Psoriasis research and treatment protocols must be more inclusive and cater to diverse skin types. Black individuals should be adequately represented in clinical trials for new psoriasis treatments to ensure the findings and recommended treatments are universally applicable. Additionally, dermatologists should be trained to recognize psoriasis on different skin types and provide culturally sensitive care.

Education can also play a significant role in addressing these disparities. It’s essential to educate not just healthcare professionals, but also individuals in the Black community about psoriasis. Awareness can lead to early detection, proper treatment, and better outcomes for individuals with this chronic condition.

While psoriasis affects individuals across racial and ethnic groups, the impact on the Black community is distinct and often overlooked. Increasing recognition of these unique challenges is the first step in improving care and outcomes for Black individuals with psoriasis. Through research, education, and improved access to care, we can work towards a future where psoriasis treatment is truly inclusive and equitable.

The post Black Skin, Missed Diagnosis: The Psoriasis Problem We Need to Talk About 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.

According to the National Alopecia Areata Foundation, about 700,000 Americans have some form of alopecia areata. Alopecia can impact individuals of all ages. African Americans are more likely to be impacted, and women are more likely to have the condition than men. Aside from the physical impact of living with this condition, those affected may also face great mental challenges. Patients with alopecia are at a greater risk for developing depression, anxiety, and other autoimmune conditions.

Alopecia and Black Hair

Black hair is notably different from other ethnic groups and its unique features allow Black women especially to create versatile hairstyles. Unfortunately, many of these popular hairstyles can be harmful and cause damage to the hair and scalp if not installed and cared for properly. The science points to the structure of Black hair being more likely to be damaged by breakage than other ethnic groups. This is due to the chemical makeup of Black hair which tends to be drier and more brittle due to its spiral structure.

Impact on the Black Community

It is important to differentiate between alopecia areata which is an autoimmune condition and traction alopecia which is preventable but also common in Black women. Traction alopecia is caused by long-term use of hairstyles such as braids, dreadlocks, extensions, and weaves that create tension on the hair and result in hair loss. Most of the risks associated with developing this type of hair loss are in individuals with relaxed or chemically treated hair, but those with natural hair may also be affected.

How Can You Live Empowered with Alopecia?

You’re probably thinking there’s nothing empowering about hair loss, but living empowered takes courage. Living with alopecia can be challenging, but you can live empowered by taking active steps to become stronger and more confident in your understanding of the condition and helping others do the same.

Be Proactive

While hair loss may be genetic and out of your control, you can prevent or slow down further hair loss by eating a balanced diet and avoiding added stress. Address other contributing health conditions such as anemia, low vitamin D levels, and abnormal thyroid levels which may also contribute to hair loss. Ensure protective styles such as braids and dreadlocks are loose and not kept in the hair for too long. Avoid chemical treatments or have them done by a professional and minimize heat styling.

Find Support

You may find it easier to cope with your diagnosis by connecting with others who are dealing with the same thing. Click here to find an alopecia support group near you.
Adults with alopecia are greater than 30% more likely to be diagnosed with depression and have anxiety. It is important to seek help from a mental health professional if needed.

Participate in a Clinical Trial

African Americans are underrepresented in clinical trials.7 Clinical trials allow researchers to contribute to improving quality of care and identifying and researching better treatment options. Alopecia clinical trials can help researchers gain more knowledge about the condition including understanding how to measure seriousness of the disease and what causes the disease. Increasing African American participation in alopecia clinical trials can help researchers investigate disease triggers, possibly develop more effective treatments, and evaluate the safety and effectiveness of long-term treatment options.

Interested in learning more about clinical trial participation? Click here for more information on participating in a Bristol Myers Squibb clinical trial, and visit BMS Study Connect to determine if you are eligible to participate in a BMS alopecia clinical trial.

This article was created together with and is funded by Bristol Myers Squibb.

References:

• NIH – Alopecia Areata
• National Alopecia Areata Foundation
• Journal of the American Academy of Dermatology – Racial Characteristics of Alopecia Areata in the United States
• NIH – National Library of Medicine. Epidemiology and Burden of Alopecia Areata
• NIH – ⦁ Black women’s hair: the main scalp dermatoses and aesthetic practices in women of African ethnicity
• Johns Hopkins Medicine. Hair Loss in Black Women: Tips from an Expert
• Journal of Investigative Dermatology. Broadening Diversity in Alopecia Areata Clinical Trial Participants

The post Living Empowered With Alopecia appeared first on Black Health Matters.