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.
Melissa Justice
[caption id="attachment_11394" align="alignright" width="225"] Abigail Musser[/caption] My daughter, Abigail Musser, was 86 days old when she passed away in July of 2017. She was a twin birth, born at 33 weeks. We found out about her diagnosis while I was...
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Noelia Canfara
I was diagnosed with polycystic kidney and liver disease 17 years ago. Since then, I have had several surgeries both on my kidneys and liver to deroof cysts and alleviate symptoms, but my kidneys continued to grow and decline in...
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Selina Borg
[caption id="attachment_9624" align="alignright" width="300"] Selina and her mom visiting with her dad in the hospital.[/caption] I am the fourth generation to be diagnosed with PKD in my family. I got my diagnosis in 2010 when I was 22. My dad,...
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John Vallarelli
[caption id="attachment_9443" align="alignright" width="250"] John Vallarelli[/caption] I was diagnosed in 1993. Initially hospitalized for diverticulitis, I had a CAT scan and the next morning, seven doctors showed up to my room and told me I have PKD. Was I shocked?...
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Renata Mendes
[caption id="attachment_9444" align="alignright" width="300"] Renata Mendes[/caption] I was diagnosed 10 years ago. I had low back pain for some weeks, so I went to emergency and they sent me to an orthopedist. After a few days taking orthopedist pills and...
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Tracey Barbour
[caption id="attachment_9442" align="alignright" width="250"] Tracey and her husband the morning of their transplant surgeries.[/caption] I found out I had PKD 10 years and 5 months ago, one month after I got married. A routine blood test showed I had a...
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Chris Dwyer
[caption id="attachment_9441" align="alignright" width="250"] Chris's scars from getting cysts drained.[/caption] I found out last year by accident. I had an arthrogram done for a torn hip labrum. Two days later the orthopedic surgeon called and let me know that I...
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Skyla Tanner
[caption id="attachment_9439" align="alignright" width="300"] Skyla with her husband and children.[/caption] I have a disease. I don’t like the way those words sound. So, I don’t speak of it often. In fact, many days I ignore it. Even when my body...
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Esmeralda Juarez
[caption id="attachment_9438" align="alignright" width="250"] Esmeralda Juarez[/caption] I've had PKD for over 13 years, but by God’s amazing grace I received a kidney transplant in 2006. I had to go through dialysis for three months. I've learned to live with it,...
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Colleen Clark
[caption id="attachment_9437" align="alignright" width="250"] Colleen's husband, Bob.[/caption] My husband was diagnosed with PKD in his mid-50s and we were sent to Emory University Hospital in Atlanta. Remarkably, his doctor was Arlene Chapman, a world-renown specialist and scientist. At that time,...
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Brittany Russo
[caption id="attachment_9436" align="alignright" width="300"] Brittany's daughter, Savvy.[/caption] We found out my daughter Savvy had ADPKD at the age of one. My husband also has ADPKD, as well as his father and sister. I was very frightened for Savvy and I...
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Sherry Sbraccia
[caption id="attachment_9435" align="alignright" width="300"] Sherry's son and daughter.[/caption] I am 39 years old, and up until recently, I never gave a second thought to my kidneys and had never heard of PKD. That all changed a couple of years ago....
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