Learn the signs of APOL1-mediated kidney disease (AMKD), how it affects Black Americans and what steps you can take to protect your kidney health.
Sponsored by Vertex Pharmaceuticals Incorporated
Kidney disease has a disproportionate impact on the Black community. While African Americans make up about 14% of the U.S. population, they account for ~30% of all people with kidney failure. Many of us already know that high blood pressure and diabetes play a role in these statistics, however, researchers have uncovered another important piece of the puzzle: genetics.
One of those genetic factors is APOL1-mediated kidney disease (AMKD), a form of kidney disease linked to a specific gene found in people of African ancestry. People with AMKD reach kidney failure 9-12 years earlier compared to other forms of kidney disease. Kidney failure requires long-term dialysis or a kidney transplant, highlighting the urgent need for regular checkups and early detection.
Understanding how your genes may affect your kidneys is more important than ever. With AMKD Awareness Day approaching, April is a good time to learn about the signs of AMKD and take steps to protect your health. For more information, we encourage you to check out resources from Power Forward Together, an AMKD awareness campaign featuring basketball Hall-of-Famer Alonzo Mourning, and advocacy resources such as the American Kidney Fund.
Everyone has two copies of the APOL1 gene; we’re born with one copy from each of our parents. Genes are sections of your DNA that tell your body how to build everything it needs, from the color of your eyes to how your organs work.
The APOL1 gene makes a protein in your immune system to help your body fight off infections. Several thousands of years ago in Sub-Saharan Africa, this gene evolved to protect people against a parasite that causes African sleeping sickness.
While these gene changes, known as variants, once offered protection, they also created a new vulnerability over time. People who inherit two copies of the APOL1 variant have a much higher risk of developing kidney disease. These variants can damage the filtering units of your kidneys, which may cause protein to leak into your urine and gradual decrease in kidney function.
Because these variants originated in sub-Saharan Africa, AMKD primarily affects people of recent African ancestry. People who identify as Black, African American, Afro-Caribbean or Latino may carry these variants and may have a higher risk of developing AMKD. Approximately 6 million African Americans carry the high-risk APOL1 genetic variants.
Kidney disease is often called a “silent condition” because many people do not notice symptoms until advanced stages. However, knowing the warning signs can help you catch issues early. Common symptoms include:
If you notice any of these changes, it is critical to speak with a health care professional to determine if there are signs of kidney disease. Even one of these symptoms is worth discussing with a doctor, especially if you have a family history of kidney disease.
Doctors often use simple blood and urine tests to check how well your kidneys are working and look for signs of damage. While these tests can diagnose kidney disease, they aren’t able to explain the cause. Even if you have kidney disease, it could be AMKD, and you might not even know it.
The only way to know for sure if your kidney disease is related to APOL1 is through genetic testing. This is often a simple test, such as a blood sample, saliva test or cheek swab, that your doctor can help arrange.
Because kidney disease can run in families, it’s important to start conversations at home. Talk openly with your family about your health history. Ask relatives if anyone has had kidney disease or needed dialysis. Sharing this information with your doctor can help guide your care and determine whether genetic testing makes sense for you.
You are not alone in this. Basketball Hall-of-Famer Alonzo Mourning experienced the impact of kidney disease firsthand. At the peak of his athletic career, doctors diagnosed him with focal segmental glomerulosclerosis (FSGS), which he later discovered was a form of AMKD.
Despite receiving excellent medical care, his kidney function continued to decline. Within three years, he required a kidney transplant to survive. Two decades later, Alonzo is actively advocating for AMKD awareness through the Power Forward campaign in partnership with Vertex Pharmaceuticals. He shares his story to encourage others in the Black community to take a proactive approach to their physical well-being. Check out www.PowerForwardTogether.com to hear Alonzo’s story, as well as testimonials from others living with AMKD.
Raising awareness about AMKD is the first step toward better health outcomes for Black Americans who may be at an increased risk for or living with kidney disease. Knowing your family history and understanding your genetic risks could potentially keep your kidneys working longer.
Knowing your risk can help you take control of your health. Make a plan to see your doctor regularly, learn the signs of kidney disease and ask whether genetic testing may be right for you.
For more information, helpful resources and a downloadable doctor discussion guide, visit www.PowerForwardTogether.com.
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