Voices of PKD

Polycystic kidney disease (PKD) is one of the world's most common, life-threatening genetic diseases. Help give a voice to a widely unknown disease by sharing your story below. Your stories can help us paint a more powerful picture of ADPKD and ARPKD, and the lives these diseases affect.

Share Your PKD Story

Whether you’re a person with ADPKD/ARPKD, a caregiver, parent to a child with PKD, or a supportive friend, you’re an important part of the PKD community. By telling your story, you can help others feel less alone on their PKD journey.

Share Your Story

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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.

Kay Gilbert

When my life partner told me that he had PKD, I said he could have one of my kidneys. He had no family history of PKD, and neither of us knew anything about it, so the first thing we did...

Shari Roten

For my family, PKD has been part of our story for generations: 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...

Scott Correa

I received the gift of life on August 21, 2024. In 2014, I was diagnosed with PKD and joined the transplant list in 2021. It was the selfless act of a friend, who donated on my behalf, and a paired...

Nouf AlDossari

When I was a baby, I was diagnosed with autosomal recessive polycystic kidney disease (ARPKD), a rare condition that affects my kidneys and liver. It was a challenging time for my family and me, and it changed our lives profoundly....

Steven Watson

I was born with PKD. I inherited the disease along with my younger brother, David, from our father. My dad had two successful kidney transplants, the later was during Thanksgiving 2015. I've been on dialysis since March of 2020, and...

Martha Gallegos

I’m 63 yrs old and I was diagnosed with PKD at the age of 45. I received a successful kidney transplant in October 2020 and have been doing very well since then. Living with this disease has taught me to...

Cathy Podgers

I just passed the two-year mark (August 14) for my kidney transplant. My sister and I had one on the same day at Hamot Hospital in Erie, Pennsylvania. She was number 99 and I was number 100. My sister received...

Lisa Baxter

I got PKD from my father. I have six siblings on dialysis, two aunts, an uncle, and a mother-in-law. I travel all around the world sharing my story and giving out resources that can help others with this journey. After...

Shaunna Butler

At 28 weeks pregnant with my son, Rayne, I lost all amniotic fluid. Between hospital visits and bedrest, I delivered him at 33 weeks. He spent the next nine weeks in the NICU—three of those weeks he was intubated. We...

Steve Baum

We’ve been active with the PKD Foundation for the last 13+ years since my PKD/PLD double transplant. The Foundation has been especially helpful to my younger siblings with its research and information.

Frances Silva

I walk for PKD because I want to do my part to help fight and put an end to PKD. I also want to raise awareness of this little know disease. My own personal story began in 1997. When my...

Lee Casati

I was diagnosed at 25 years old. I was managing high blood pressure, but also experienced back problems and kidney stones. After extensive testing, a nephrologist diagnosed me with PKD. Thanks to medication, I lived a normal life as a...

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