Story added: September 3, 2025
My grandmother lost her life to PKD in 1946.
My dad passed in 1963 from a brain aneurysm, a complication of weakened
blood vessels linked to PKD.
My brother received a transplant in 1996 and has defied the odds, living decades beyond the expected timeframe.
My sister suffered a stroke in 1997, had a transplant in 2008, and fought bravely until her passing in March 2020—the very week our world shut down from COVID.
My eldest child and two nieces live with this diagnosis today.
And me—I was diagnosed as a young girl in 1972. I’ve been blessed to raise four incredible children, but today, I live with stage four kidney failure. I am praying daily that I can stay as healthy as possible without needing dialysis or a transplant. My fight is for my children, their spouses, my grandchildren and great grandchildren, and my precious husband.
Tomorrow, on PKD Awareness Day, I stand in honor of my family’s journey, for
all who have battled, and for all who are still fighting. Will you take a moment to learn about PKD, share awareness, and hold space for the millions impacted worldwide?
Shari Roten
For my family, PKD has been part of our story for generations: