Junelle's AMKD Story
After Junelle and her husband had her third daughter, they decided to get supplemental life insurance and were surprised when the process led to the discovery of damage to Junelle's kidneys. A healthy, fit woman in her 30s with no known family history of kidney disease, Junelle and her doctors were unsure why her kidneys weren't working. About a year later, her nephrologist requested a kidney biopsy which showed she had focal segmental glomerular sclerosis (FSGS).
"I was shocked. I was baffled. I wanted to know why. Why me? Everyone has that question. Why now?" said Junelle. "I was so young and had very small children. It was the beginning of my life. There was just a lot of why's."
By the time Junelle had finally received her diagnosis, she had begun developing symptoms including high blood pressure, visible proteinuria and anemia. "It was just a rapid deterioration from there," Junelle said. She soon began dialysis treatments before receiving a kidney transplant from a living donor, her brother. Five years later, the transplant failed and she needed to resume dialysis, choosing to do peritoneal dialysis at home.
Throughout her kidney disease journey, Junelle said she practiced "radical acceptance" and found her "reason why": her children. "I did not want to be a statistic and leave my daughters without their mom. So that was really what carried me through even on my darkest days."
Because of her work as a health care policy analyst, Junelle was aware of recent developments in kidney disease research and learned about APOL1-mediated kidney disease (AMKD) when the research was first published in 2010. "I saw an article on the APOL1 discovery and I said, 'I wonder if that's what I have,' because nothing else could explain it," said Junelle. Genetic testing for the variant would not become available until later. When Junelle needed a second transplant, her oldest daughter was able to complete the genetic testing while trying to qualify as a donor for a paired donation for her mother. Her results revealed that she had AMKD. Junelle pushed for testing for herself, but her health care team decided the testing was not necessary since she had already received the new kidney by that point.
As the chief strategy officer for GlomCon, Junelle was asked to speak at a panel on APOL1 at the KDIGO meeting in 2024 — which was held in Ghana that year. "When I was sitting on that panel and everyone was confirmed to have APOL1 except me, I went back home and I told my doc, I need to get tested. It's clear what my outcome has been, but I have children and I need to know," said Junelle. "And outside of children, I need to have my questions answered. And if there is a test that can answer that, I should be able to know." Finally, Junelle had the answers she needed and it was confirmed that she had AMKD.
Now Junelle is working in her personal and professional life to spread awareness of AMKD, saying that the Black and African American communities need to know about its potential impact on their kidney health. "We call this the sickle cell of the kidney. The Black community is aware of sickle cell and it's equally important for them to understand APOL1," said Junelle. "And it would explain a lot of things: why there are so many dialysis clinics in our community. Why so many of our family members, even those who were as young as I was when I started or even younger, why so many of us end up on dialysis? Why it's not a result of what we did to ourselves — in terms of diet, exercise, supplements or alcohol consumption. This is a hereditary, genetically linked disease. So, it answers a lot of questions. And I think there's an empowerment in that: to understand and know."