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.
Shar Carlyle
I have been a PKD Foundation Chapter member for 14 years. I have been to Washington D.C. three times representing kidney patients from California on a number of fronts, both with the PKD Foundation and with NKF. But I'm getting...
Read MoreFelipe Saint-Martin
I am PKD, this is my relationship with the disease. It's written on my genes as much as everything. By the time I was eight years old, I figured it out that my mother had the same thing that my...
Read MoreHeather Gillis
When a child passes away, there are no words that can take away the pain of a parent's loss. It is unimaginable to think of a child dying, but in many people's lives this is their reality, especially in those...
Read MoreScott Peppet
My mother died from PKD complications at 61, after having two kidney transplants. Her kidneys failed around age 50, and she had a very rough decade after that. She was constantly in and out of the hospital. I was in...
Read MoreRachel Kunstadt
[caption id="attachment_1137" align="alignright" width="250"] Dana Aber performs at Broadway Sings for PKD.[/caption] My father has PKD, and in the summer of 2012, he was dying from complications of PKD. My dad had been on dialysis since 1999 and it took...
Read MoreSean Kenny
My son Patrick has ARPKD, he was diagnosed at 20 weeks during a sonogram. I didn't know what PKD was at the time. Like most people, you don't know about it until it happens to you or a loved one....
Read MoreCyrilla Haverkamp
[caption id="attachment_1135" align="alignright" width="350"] Cyrilla decided to hike the Camino de Santiago or "The Way of Saint James" as a way to honor her grandmother and other family members who have died from PKD.[/caption] My grandmother died in 1961 at...
Read MoreZac Haas
My daughter Anabel was diagnosed with PKD around 20 weeks gestation. We were taken aback regarding the possibility of a serious, life-altering condition. Many emotions went through our minds and affected my entire family emotionally and physically. Anabel is now...
Read MoreGayle Sellars
Gayle Sellars passed away in March of 2013, leaving behind a strong legacy of advocacy and passion for finding treatments and a cure for polycystic kidney disease (PKD). Gayle first found out about PKD when her mother, Marilyn Zubo, was...
Read MoreDale Filsell
I was diagnosed with PKD in 2005 after an MRI on my back. Once I found out PKD was genetic, my mom and sister were tested and diagnosed as well. My grandmother died from PKD, although no one knew the...
Read MoreJana Cox
I volunteer for the PKD Foundation not only for my daughter who has autosomal recessive PKD (ARPKD), but all of the children out there that have this terrible disease. A relatively rare form of PKD, ARPKD affects approximately 1 in...
Read MoreJohn Jennings
I am a National Guardsman and Army veteran and had just finished two deployments in Saudi Arabia when I was diagnosed with PKD in 1995. At the time, my only symptom was high blood pressure. Eleven years later, those symptoms...
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