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.
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.
JoAnn Villanueva
[caption id="attachment_11455" align="alignright" width="250"] JoAnn and Suzanne’s story in the Daily Southtown[/caption] I write my PKD story on the 14th anniversary of my kidney transplant! I have two sisters, no brothers. I come from a LARGE Irish Catholic family (all...
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Lisa Towler
[caption id="attachment_11173" align="alignright" width="300"] Lisa Towler[/caption] This month marks 26 years ago I found out I had PKD. It was the second week of my senior year of high school. I'm adopted and several years ago I found some information...
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Rob Herman
[caption id="attachment_10425" align="alignright" width="300"] Rob (left) with his family.[/caption] PKD runs in my my mom's side of the family. It has been devastating to us. My grandfather died from a major stroke caused by PKD. My mom had a major stroke...
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Cheryl Flothe
[caption id="attachment_9838" align="alignright" width="300"] Cheryl and her husband, Glenn, on her first outing after her kidney transplant in 2007[/caption] PKD runs in my family through my maternal grandfather's side---he, his dad, sister, brothers and cousins had/have the disease. Most who...
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Glenna Frey
[caption id="attachment_9829" align="alignright" width="300"] Glenna with her husband and children.[/caption] I donated my kidney to a stranger April 2017. I have been a nephrology nurse for over 30 years and understand the challenges of living on dialysis. Also, my husband...
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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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