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Voices of PKD

Voices of PKD is a collection of stories, testimonies, photos and videos that tell the story of PKD through the eyes of the PKD community.

You can help give a voice to a widely unknown disease by sharing your story. Your experiences can paint a more powerful picture of what it’s like to live with PKD.

PKD runs in my my mom’s side of the family. It has been devastating to us. My grandfather died from a major stroke caused by PKD. My mom had a major stroke that left her a vegetable at age 35 from […]

PKD runs in my family through my maternal grandfather’s side—he, his dad, sister, brothers and cousins had/have the disease. Most who came before died with no chance of dialysis or transplants. My mom and uncle died in their early 60s […]

I donated my kidney to a stranger April 2017. I have been a nephrology nurse for over 30 years and understand the challenges of living on dialysis. Also, my husband and daughter have polycystic kidney disease. My husband received a […]

I was diagnosed with polycystic kidney and liver disease 17 years ago. Since then, I have had several surgeries both on my kidneys and liver to deroof cysts and alleviate symptoms, but my kidneys continued to grow and decline in […]

I am the fourth generation to be diagnosed with PKD in my family. I got my diagnosis in 2010 when I was 22. My dad, Roland, was diagnosed at the age of 42, and six months ago, at the age […]

I was diagnosed in 1993. Initially hospitalized for diverticulitis, I had a CAT scan and the next morning, seven doctors showed up to my room and told me I have PKD. Was I shocked? No; surprised, yes. My mom had […]