AMKD Beyond the diagnosis: Stories of living with AMKD
Read the stories from our AMKD community and find out why they encourage everyone to be APOL1 Aware.
View the stories
Kristal
Kristal first discovered something was wrong with her kidneys when shew as pregnant with her daughter. After finding protein in her urine, her nephrologist did a biopsy that showed she had FSGS. Less than a year later, she began dialysis. Kristal did not undergo genetic testing until she was doing a workup to get on the list for a second transplant. It was then she learned she had AMKD. Read her full story.
Nayan
Chronic headaches and high blood pressure prompted Nayan to see out answers from his doctor in 2005. After a biopsy in 2006, he was surprised to learn he had FSGS, which eventually damaged his kidneys to the point he needed to do dialysis treatments. Nearly a decade later, Nayan was placed on a transplant waitlist and through the process, discovered he has AMKD. Read his full story.
Sharron
When Sharron learned the swelling in her legs was caused by kidney failure, she was “floored.” After a kidney biopsy, she was diagnosed with focal segmental glomerulosclerosis (FSGS). Eventually, she needed dialysis treatments, before she received a kidney transplant from her sister. Only after transplant did Sharron learn that her FSGS was the result of APOL1 gene variants. Read her full story.
Quenton
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. Read his full story.
We're elevating the voices of the AMKD community to raise awareness and inspire action. We thank all those who have generously shared their experiences with the kidney community.
