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.
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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Karen Dellinger
My name is Karen Dellinger and my father had PKD. So we, his children, decided to be tested to possibly give him a kidney. It was then we found that my older sister had the same disease, as it's hereditary....
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Robert Attebery
My name is Robert Attebery and I’m a 60-year-old enrolled member of the Karuk tribe in Northern California. I was diagnosed with PKD a few years back. My mother died at 75 of a burst aneurysm from complications of PKD....
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Brian Buenaventura
I’ve been struggling with this disease for 10 years already after being diagnosed in early 2012. I continued my life, but in 2018 my labs hit high so I started dieting extremely and exercise regularly. It’s really hard to beat...
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