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.
David Birkley
It was the year 2000. A longtime friend of mine noticed that I had sudden weight loss and recommended that I go see a doctor, which I did. My mother had PKD, and I felt it was a good time...
Read MoreKate Williams
My name’s Kate. I have PKD, and my son, Owen, has PKD. So, finding out that first day, everything was really kind of a blur. Our doctor explained what PKD was and then said please don't go home and Google...
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Samuel Spencer
I was 12 when I was diagnosed with PKD. It turns out my genes mutated, so I'm the only one in my family with the disease. Today, I'm 28. I didn't really think much about the disease until this year...
Read MoreDiana Hartley
My husband, Tim, was diagnosed in 2002. In March of 2018, he was eligible to begin the transplant process. He was placed on the list about a year ago and received his new kidney from a living donor on August...
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Jan Elf
I was diagnosed with PKD when I was 40. My sister was also diagnosed near that time. She was six years older than me. She died five years ago from a stroke. I began dialysis when I was 59, I'm...
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Darlene Vandenbergh
My father was diagnosed with PKD in the 1990s when the only thing we knew about PKD was cysts on kidneys, dialysis, kidney transplant, that it was hereditary and that it affected many organs in the body. My dad lost...
Read MoreAmber-lee Kate Petersen
My name is Amber-lee Kate Petersen, 18 years old, and I live in South Africa. In my final year of high school, I fell incredibly ill. I experienced excruciating pain in my abdomen area. I was kept in a hospital...
Read MoreChristopher Nuzzo
My name is Christopher and I have polycystic kidney disease. I am 20 years old and go to school at Manhattan College to study media production. I always knew my family had a history with PKD because my grandmother had...
Read MoreJerry Petersheim
PKD started with my grandfather, who died from the disease at the age of 49. He and my grandmother had twelve children, of whom six had PKD. Three aunts died around the age of 50 without the availability of dialysis....
Read MoreTilia Sanchez
My name is Tilia, and I have Stage 5 PKD. I was diagnosed when I was about 13 years old and did not know I would be at this stage of my disease at this age. My life consists of...
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Mike Balles
I was diagnosed with ADPKD at thirty-five. While my mom knew her siblings had kidney issues, she thought she did not, since she had no symptoms. It took twenty years for my kidney function to gradually decline. I had a...
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Gregory Ofiara
I have survived Polycystic Kidney Disease for nineteen years. Having family support has been critical to my health; my brother-in-law, a better match than my family, was my living donor. His kidney donation was the most meaningful gift I’ve ever...
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