{"id":41118,"date":"2024-03-13T11:29:07","date_gmt":"2024-03-13T15:29:07","guid":{"rendered":"https:\/\/blackhealthmatters.com\/?p=41118"},"modified":"2025-10-21T14:33:23","modified_gmt":"2025-10-21T18:33:23","slug":"what-you-need-to-know-about-a-rare-genetic-kidney-disease","status":"publish","type":"post","link":"https:\/\/blackhealthmatters.com\/what-you-need-to-know-about-a-rare-genetic-kidney-disease\/","title":{"rendered":"What You Need to Know About a Rare Genetic Kidney Disease"},"content":{"rendered":"

We often identify physical attributes like hair color and eye color as being genetic, but did you know that some types of kidney disease can be passed down to you by your parents, too?<\/p>\n

There are many known types of genetic kidney disease. Some are common, and others are extremely rare. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a common genetic kidney disease passed down in families that can lead to long-term kidney damage.<\/p>\n

\u201cI was in the dark and uneducated about how [PKD] can be passed down through generations. The fact that it was hereditary was unknown to me and others in my family.\u201d -PKD Foundation advocate Tamara Walker.<\/p>\n

The PKD Foundation<\/a> is the only organization in the United States solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. African Americans are at an increased risk of experiencing poor outcomes related to PKD, and the PKD Foundation is committed to addressing racial disparities in PKD care.<\/p>\n

What Is Autosomal Dominant Polycystic Kidney Disease?<\/h2>\n

ADPKD is characterized by<\/a> the development of fluid-filled cysts<\/a> in the kidneys, which can lead to gradual kidney growth and, eventually, kidney failure. It affects children and adults, and it may also impact those with no known family history of the disease.<\/p>\n

ADPKD is caused by<\/a> genetic changes. It affects individuals of all ethnicities. There is limited research that focuses on the prevalence of ADPKD among African Americans, but clinical research suggests that unique challenges related to the disease do exist.<\/p>\n

Various factors, such as delayed diagnosis, limited access to healthcare, and genetic variations, may contribute to the development and management of ADPKD in African Americans.<\/p>\n

If you have a parent affected by ADPKD, there is a 50 percent chance that you inherited the ADPKD gene. If you have ADPKD, there is a 50 percent chance you will pass it on to your children. This risk can continue throughout several generations, so having conversations about your family’s health history is important.<\/p>\n

Family conversations are crucial for improving the Black community’s early detection and overall healthcare outcomes.<\/p>\n

What are the symptoms to look for?<\/h2>\n

What are the symptoms to look for? ADPKD is often missed due to limited symptoms, especially early on. Some symptoms may be mistaken for other conditions. Because ADPKD is a progressive disease, symptoms usually get worse over time and can vary in their severity. Click here<\/a> to learn more about the symptoms of ADPKD.<\/p>\n

As ADPKD progresses, it can lead to a decline in kidney function over time. Early detection and symptom management are key.<\/p>\n

What comes after diagnosis?<\/h2>\n

Being diagnosed with a new condition can feel overwhelming, but there is hope. It may be difficult to know where to turn with your questions and concerns, but learning as much about your condition as possible can help empower you to proactively manage your disease and maintain a high quality of life.<\/p>\n

You can connect with the PKD Foundation’s support team<\/a>, have your questions answered, and access resources to address your concerns by dialing 844-PKD-HOPE (844-753-4673).<\/p>\n

Can I slow the disease progression?<\/h2>\n

Slowing the progression of ADPKD involves a combination of lifestyle changes, medications, and regular medical monitoring by your healthcare team.<\/p>\n

In general, you can slow ADPKD progression by:<\/p>\n