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.
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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.
Ro Felicia
I went undiagnosed my whole life until I started checking my health records. I felt as if my body was breaking down. My health records showed my kidney function had declined—it had been declining for years. No doctor ever told...
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Patsy Parkin
My sons, Donald, David, and Daniel were born on June 21, 1978. They’re perhaps the largest triplets born in the U.S. (a total of 22 lbs., 22 oz., or 23 lbs., 6 oz)—larger than the current record holders in the...
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Jeannie Brown
I am Jeannie Brown and I was diagnosed at 21 with PKD. There are six generations on my maternal side who’ve had or currently have this disease. I grew up educated in what PKD was and what the future may...
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Greg Schulmeister
It's been a year since my kidney transplant— and wow, what a difference a year can make. It's nice being able to enjoy life again, even the little things are enjoyable. Before my transplant, I had pain every day and...
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Rachel Hurford
My name is Rachel Hurford and PKD has affected my family for as long as I can remember. My grandad had PKD, and though my grandma donated her kidney to him, he still suffered complications after the donation and sadly...
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Simone Molter
I'm Simone Molter and I live in Hamburg, Germany. Since I was a child, I’ve known that I have ADPKD. My father did hemodialysis at home and did his best to show us that having ADPKD isn’t a reason to...
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Nica Lorber
I am Nica Lorber, almost everyone on my Dad's side of my family has PKD. My grandma and aunt died from it. My dad, other aunt, and cousin have all had transplants. At 47, my PKD hasn't progressed too bad,...
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Dawn Glover
My name is Dawn Glover. My father died of a ruptured brain aneurysm associated with PKD when he was only 34 years old. I was diagnosed in my early 30s, after being hospitalized for an abscessed cyst. I'm now 65...
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Stephanie Blumenthal
My name is Stephanie Blumenthal. When my creatinine started to go way up, my family and I began our search for a kidney. Some friends came forward and offered to be a donor, others included my need at the bottom...
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Jan Maxwell
My name is Jan Maxwell and all of my father's children inherited PKD. My father died at age 43 because there was so little progress regarding surviving on dialysis. Kidney transplants weren’t yet an option. My sister, Susan, received her...
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Dawn Gignac
My name is Dawn Gignac and I recently found out that I have PKD. My brother had it and it came from our dad. My two nieces have it and two of their children also have it. I was so...
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Maggie Sessler
My name is Maggie Sessler and my husband, Mike, and I have been together for 21 years. Mike was diagnosed with PKD at the age of 25. His dad, Keith, passed away in 2007 from a stroke awaiting his second...
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