The APOL1 gene is recognized as a kidney risk gene. APOL1-mediated kidney disease is a rapidly progressive form of proteinuria kidney disease. Although this gene is autosomal recessive the risk comes from the genotype of both parents. Compared with other chronic kidney disease patients, those of African ancestry with a confirmed APOL1 gene variant progress to dialysis 9 to 12 years earlier. APOL1-mediated kidney disease is often associated not only with proteinuria but also with a rapid decline in eGFR, earlier onset of kidney disease (including adolescence), and leads to a mean age of kidney failure in the U.S. of 45 years. Patients are often asymptomatic. Richard Knight, co-founder of the APOL-1 Alliance (https://apol1alliance.org/), provides a patient perspective on this condition.

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Richard Knight, Bowie State University describes his patient journey and kidney transplant. He describes the need for patient education and self-advocacy.

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