Quenton's AMKD Story
Quenton had to advocate strongly for himself to get answers about his kidney disease. He was initially diagnosed with hypertensive kidney disease — meaning the cause of his kidney damage was high blood pressure — when he was rushed to the hospital in 2020 for heart-related concerns. In May 2021, his kidney function had dropped to less than 15% and he began dialysis treatments. When Quenton wanted to know what caused his kidney disease and why it progressed so quickly, no one could tell him. In fact, he was told "they didn't need to know." Quenton persisted and sought out genetic testing on his own. The test said he had a rare genetic kidney disease called focal segmental glomerulosclerosis (FSGS) as a result of APOL1-mediated kidney disease (AMKD).
"A lot of people would have thought I would be devastated," said Quenton. "The day he brought me those test results it was like a rebirth, and now I had a sense of my kidney identity." Only after seeing the genetic test results did Quenton's doctor finally order a biopsy to confirm the results. While Quenton's treatment plan did not change, the information will have an impact if he receives a kidney transplant. It also enabled Quenton to help his family be more proactive in their own kidney health, as he encouraged his five siblings and his parents to undergo testing.
"As someone living with end-stage kidney disease, and a genetic form of a rare kidney disease, I've learned just how deeply our genes can shape our health," said Quenton. "Many people, especially in the Black community, don't know they could carry mutations in the APOL1 gene that raise the risk of developing AMKD. This isn't just about statistics. It's about us, our families, our futures and our right to early diagnosis, better care, and a fighting chance. I'm proud to stand with the American Kidney Fund on AMKD Awareness Day to help spread the word."