{"id":65265,"date":"2025-12-30T17:03:19","date_gmt":"2025-12-30T22:03:19","guid":{"rendered":"https:\/\/blackhealthmatters.com\/?p=65265"},"modified":"2025-12-30T17:05:14","modified_gmt":"2025-12-30T22:05:14","slug":"a-conversation-about-apol1-mediated-kidney-disease-amkd","status":"publish","type":"post","link":"https:\/\/blackhealthmatters.com\/a-conversation-about-apol1-mediated-kidney-disease-amkd\/","title":{"rendered":"A Conversation About APOL1-Mediated Kidney Disease (AMKD)\u00a0"},"content":{"rendered":"

Presented By: Vertex<\/strong><\/p>\n

Dr. Stacy Johnson<\/span>\u00a0<\/span><\/p>\n

Nephrologist\u00a0\u00a0<\/em><\/p>\n

Clinical Development Director\u00a0<\/em><\/p>\n

Vertex<\/span>\u00a0<\/span><\/p>\n

Alonzo Mourning<\/span>\u00a0<\/span><\/p>\n

Disease Advocate\u00a0\u00a0<\/em><\/p>\n

Vertex<\/span>\u00a0<\/span><\/p>\n

Kidney diseases can show up anywhere, including NBA locker rooms. Athletic legend and disease advocate Alonzo Mourning shared his experience discovering and cheating with APOL1-Mediated Kidney Disease at the Black Health Matters 2025 Health Summit & Expo.\u00a0<\/span>\u00a0<\/span><\/p>\n

He was joined by Black Health Matters Founder Roslyn Daniels and Dr. Stacy Johnson, Nephrologist, Clinical Development Director at Vertex.\u00a0<\/span>\u00a0<\/span><\/h3>\n

Johnson highlighted the deep racial disparities in the diagnosis of kidney diseases. \u201cAlthough\u00a0African-Americans\u00a0make up about 14% of the US population, they represent about 30% of the cases of kidney failure,\u201d she said. The research has deepened into the\u00a0<\/span>genetic components<\/span><\/a>\u00a0of kidney disease in recent years.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWe have known for a long time that\u00a0African-Americans\u00a0have a higher chance of developing kidney disease, ending up on dialysis, or needing a kidney transplant. And it\u00a0wasn’t\u00a0until about 2010 when scientists were able to\u00a0actually\u00a0identify\u00a0that there is a genetic cause,\u201d Johnson continued.\u00a0<\/span>\u00a0<\/span><\/p>\n

A 2025 review of the\u00a0<\/span>Journal of Kidney Medicine<\/span><\/i><\/a>\u00a0<\/span><\/i>reports that \u201c6 million African Americans have a high-risk genotype,\u201d which puts them at risk of kidney disease.\u00a0<\/span>\u00a0<\/span><\/p>\n

Johnson clarified that this risk\u00a0can\u00a0persist despite adopting doctor recommendations. \u201cI think a lot of times before that people thought oh maybe your kidney disease isn’t getting better because your blood pressure isn’t under control, because you’re just not doing the right things,\u201d she said. \u201cBut what we know is that no,\u00a0there’s\u00a0nothing that someone is doing wrong. You could do everything that you need to do to take care of your health, and sometimes the kidney disease continues to progress. But having that knowledge means now we can put a name\u00a0to\u00a0it. When you can name something, then you can start to deal.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cThe United States doesn’t really believe in investing in preventative care for its citizens,\u201d said Daniels. \u201cWe bear this burden of disease; it’s not our fault.\u201d <\/span>\u00a0<\/span><\/p>\n

\u201cWe’re not getting the care that we deserve along the way, and by the time we’re diagnosed, it’s advanced,\u201d Daniels added. \u201cThere\u2019s\u00a0no stigma here.\u00a0There’s\u00a0no pointing fingers.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Heart disease is dubbed \u201cthe silent killer,\u201d but kidney disease is just as sneaky. Its ability to be confused\u00a0for\u00a0other issues makes it extremely dangerous. That casual discomfort\u00a0you\u2019re\u00a0dealing with might be a symptom of it creeping into your life undetected.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cThe CDC estimates maybe one out of nine US Americans\u00a0<\/span>has kidney disease<\/span><\/a>, and most of them don’t know it,\u201d said Johnson.\u00a0<\/span>\u00a0<\/span><\/h3>\n

\u201cSo that means there are a lot of there are like hundreds of thousands if not millions of people walking around with that\u00a0are they’re\u00a0losing kidney function slowly and steadily. Often, they may not have any symptoms.\u00a0Sometimes they may have pretty mild symptoms like a little bit of fatigue.\u00a0Maybe they\u00a0might see some swelling in their feet that comes and goes,\u00a0maybe they\u00a0might see foamy urine, and they think, \u2018Oh, I wonder if that means anything.\u2019 But then they don’t, you know? No one follows up.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

That lack of follow-up has severe consequences for many people. Their lives and schedules change. \u201cUnfortunately, by the time it gets to the more advanced stages often people are basically headed towards either needing dialysis or a kidney transplant,\u201d said Johnson.\u00a0<\/span>\u00a0<\/span><\/p>\n

Mourning was fresh off the heels of an Olympic win at a point in his life where symptoms of kidney issues became unignorable. His victory lap was cut short.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cI had just witnessed the birth of my daughter,\u201d he said. \u201cI was\u00a0defensive\u00a0player of the year. I\u00a0had\u00a0just finished winning the gold medal. I mean, I was at the\u00a0the\u00a0top of the world,\u201d he said.\u00a0<\/span>\u00a0<\/span><\/p>\n

Mourning noticed a few symptoms, but they did not jump out at him right away. \u201cI was\u00a0just tired. I had a lot of lethargy,\u201d he said. \u201cMy legs were swelling a little bit and initially I\u00a0kind of attributed<\/span>\u00a0<\/span>it to the intense physical training and the travel and flying over to Sydney, Australia.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

He was referred\u00a0to\u00a0a nephrologist, a medical doctor specializing in the health of the kidneys. \u201cAt that time when I was 30 years\u00a0old\u00a0I didn’t know what a nephrologist was,\u201d he added. \u201cThey diagnosed me with FSGS, focal segmental glomerulosclerosis.\u00a0It’s\u00a0a disease that slowly scars the filters in the kidney, and I had the aggressive form.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

The first opinion was quite drastic. The doctor predicted that Mourning would be on dialysis and the transplant list within 365 days. Evaluations of kidney disease can be\u00a0<\/span>subjective<\/span><\/a>. In some cases, it is wise to consult another voice.\u00a0<\/span>\u00a0<\/span><\/p>\n

Mourning refused to accept the course of treatment without seeking a second opinion.\u00a0<\/span>\u00a0<\/span><\/h3>\n

\u201cI was able to find another doctor. And that doctor took a different approach. He said, “Look, let’s try to slow the progression of the disease down with some medication, oral medication,\u201d he said.\u00a0<\/span>\u00a0<\/span><\/p>\n

They\u00a0participated\u00a0in shared decision making (SDM), a practice advocated for in a 2023 article from the\u00a0<\/span>Clinical Kidney Journal<\/span><\/i><\/a>.<\/span><\/a>\u00a0This shifts away from a paternalistic viewpoint and empowers the patient.\u00a0<\/span>\u00a0<\/span><\/p>\n

The less aggressive strategy worked out. \u201cI was never on dialysis, and I didn’t need a transplant until three years later.\u201d<\/span>\u00a0<\/span><\/p>\n

Mourning\u00a0participated\u00a0in clinical research to further efforts to gain knowledge about his condition. \u201cMy nephrologist informed me about a research study that was designed to better understand the type of kidney disease that I had, and after discussing all of this with him, I had to trust that he was doing the right thing for me,\u201d he said. Genetic testing and other studies can\u00a0<\/span>greatly benefit<\/span><\/a>\u00a0the outcomes of patients. He suggested that attendees talk with their family members to find out if they have been\u00a0impacted\u00a0by kidney disease in the past, so that they can share that information with their doctors.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWe\u2019ve\u00a0got to know our family history.\u00a0We\u2019ve\u00a0got to have dialogue,\u201d Mourning added.<\/span>\u00a0<\/span><\/h3>\n

Daniels explained how coming together as a community can spark dialogue. \u201cYou all are the beginning.\u00a0You’re\u00a0laying the foundation,\u201d she told attendees. \u201cYou all will share with your friends and family the importance of the knowledge shared here.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Johnson pointed out the importance of proactivity in healthcare. \u201cI think this conversation is really important,\u201d added Johnson. \u201cWe may see some of these symptoms and hope that things are going to change, but hope is not a strategy. We need to ask questions and have these things checked out.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Mourning\u00a0advised the room to\u00a0learn from his mishaps. \u201cDon’t ignore the signs and the<\/span>\u00a0<\/span><\/p>\n

symptoms, okay? Don’t just brush it off, okay? That was something that I did.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Presented By: Vertex Dr. Stacy Johnson\u00a0 Nephrologist\u00a0\u00a0 Clinical Development Director\u00a0 Vertex\u00a0 Alonzo Mourning\u00a0 Disease Advocate\u00a0\u00a0 Vertex\u00a0 Kidney diseases can show up anywhere, including NBA locker rooms. Athletic legend and disease […]<\/p>\n","protected":false},"author":21,"featured_media":65266,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"video","meta":{"footnotes":""},"categories":[6560,3029],"tags":[4189,3908,1894,1895,1915,846,6739,6635,3416],"class_list":["post-65265","post","type-post","status-publish","format-video","has-post-thumbnail","category-kidney-disease-transplants","category-youtube","tag-alonzo-mourning","tag-apol-1","tag-chronic-kidney-disease","tag-ckd","tag-kidney","tag-kidney-disease","tag-main-video","tag-noads","tag-vertex","post_format-post-format-video"],"yoast_head":"\nA Conversation About APOL1-Mediated Kidney Disease (AMKD)\u00a0 - Black Health Matters<\/title>\n<meta name=\"description\" content=\"Kidney diseases can show up anywhere, including NBA locker rooms. 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