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
By clicking Subscribe you’re confirming that you agree with our Terms & Conditions.
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.
Karen Kessler
I inherited my PKD from my father’s side of the family. My grandfather died of kidney failure in his late 30’s when my father was about 19 years old. My father was diagnosed young, and his kidneys failed at age...
Read More
Alyssia Gomez
My name is Alyssia and I was diagnosed with PKD at the age of 20. My diagnosis came when I was serving in the US Army Reserves and I had an unexplained abdominal pain during our exercise. I'd became very...
Read More
Janice Lucas
My aunt was diagnosed in the early '70s and the hospital in Seattle asked my cousins and siblings to get tested. I was eight months pregnant at the time and I couldn't travel to participate. My aunt and my dad...
Read More
Paulette Meaney
My husband was diagnosed with PKD in 2008. His kidney function declined significantly over the years, and in June 2020 he was referred for a transplant. Thank God I was a great kidney match. I was able to donate my...
Read More
Lainie E.
I represent the third generation of ADPKD in my family—I was diagnosed in my early 20s. Those in my family who are no longer with us, passed away due to complications of the disease, but my father received the first...
Read More
Kaylee Gunn
When I was 32 weeks pregnant with my first child, we found out he had cystic kidneys. We were told to expect the worst. If he lived through birth, he may not have fully developed lungs. He may need dialysis...
Read More
Ashlee Olando
We found out that my unborn daughter had a cyst in her right kidney. It was then that they questioned who she’d received it from, and we discovered that my husband had ADPKD. He was never screened for it even...
Read More
Rachel Homewood and Bennett Homewood
My two-year old son, Bennett, was unexpectedly born with ARPKD. It’s been a long journey so far. NICU stay, surgery, meds, blood draws, blood pressure checks, and many doctor appointments. Despite everything he’s gone through and will continue to go...
Read More
Corey Morgan
I found out I had PKD when I was seven weeks pregnant with my daughter. It wasn't the best news—and then I found out my unborn child could also have PKD. After she was born, we ran tests and it...
Read More
Holly Blaine
I found out I had PKD in October 2015 when I was 29 years old. I was going to become a living donor for my father who also has PKD. I had an initial ultrasound, and followed up with my...
Read More
Greta Ellis
My father died at age 39—I was only 13 years old. We were unaware he had PKD until after his death. Looking back, he had all the outward signs (large belly, high blood pressure). I began having problems with constant...
Read More
John Ventresca
Several years after I was diagnosed was when I started to feel the effects of PKD. The first issue I noticed was fatigue, and also over time, I noticed more and more back pain. In the afternoon I would notice...
Read More