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.
Paige Donna Myers
My name is Paige Donna Myers and I was diagnosed with PKD in 1993—I'd never heard of PKD ever! I come from The Republic of Trinidad and Tobago. I started having kidney infections at the age of 19 that continued...
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Tracey Looney
My name is Tracey Looney and I was in my early 20s when I was diagnosed with ADPKD. I'm now 47. PKD was passed down on my maternal side of the family. My grandmother died in 1988 at the age...
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Dawn Glover
My name is Dawn Glover and my dad died in 1970 of a ruptured brain aneurysm associated with PKD. He was only 34. I’m 64 and I was diagnosed in 1991 at the age of 34. My progression has been...
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Rob Visda
My husband’s name is Rob Visda. When he was diagnosed with PKD at 18, he was going through the process of enlisting in the Marines. He inherited the disease from his mom’s side of the family. Because of his diagnosis...
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Trish Kaiser
My name is Trish Kaiser and my ADPKD diagnosis came in Fall 1999, just a few months before my eighth birthday. I still remember my mom taking my older brother and I to renal ultrasounds one day before school. My...
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John Burns
My name is John Burns. I’m 58 years old, and I was diagnosed with ADPKD when I was 43. No one else in my immediate family has the disease. I had a cerebral aneurysm rupture out of the blue which...
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Kaylann Ryan
I am 38 years old and in stage 3 ADPKD. Three previous generations of my family also struggled with PKD (Papa Shorty, Nana, and my mom). None of them are with us anymore, but they taught me so much about...
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Jean Sommer
I was diagnosed with PKD and PLD in 2001, and three months later my sister was diagnosed. My sister, brother, and I inherited PKD from our mother, who never knew she had PKD. She died from complications after brain aneurysm...
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Lauren Thompson
I was diagnosed in 2019 as I was turning 27. I was feeling really tired all of the time. I thought it might be work and burn out, but requested a blood test by the GP. My bloods showed reduced...
Read MoreStephanie Fehrmann
I was diagnosed with PKD when I was 7 or 8 after my dad was diagnosed with PKD. Being diagnosed so young was strange because I didn't really understand what it meant. Now I do. As a young adult, I...
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Haley McNamara
My name is Haley McNamara and I'm a 28 year-old Southern California native currently working in the sports industry at Major League Soccer. I recently moved back to California after being in NYC for five years when my PKD took...
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Adrienne Montgomery
I was diagnosed when I was 26, and by accident. When I went to the ER for shortness of breath, it ended up being hypertension. I had to get a CT, and by chance, there were cystic kidneys. I have...
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