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.
Transplant Games provide a way to honor organ donation
[caption id="attachment_1091" align="alignright" width="420"] JoAnn Villanueva and her sister, Janice Gill, train for their swimming event.[/caption] The Transplant Games of America is a multi-sport festival event for individuals who have undergone life-saving transplant surgeries. Competition events are open to living...
Read MoreBrightening the future for PKD families
[caption id="attachment_1086" align="alignright" width="300"] Brianna was diagnosed with PKD at just 11 years old, making her the youngest in a family full of PKD.[/caption] The spring, for many, signals a new start and a perfect time to set new goals...
Read MoreKissing for a cause
[caption id="attachment_1092" align="alignright" width="240"] For Karli and Cuyler Franzke, an age-old wedding tradition turned into an opportunity to raise funds to support the PKD Foundation.[/caption] Every wedding is a little different - some couples jump over brooms, break glasses or...
Read MoreA family tree of PKD
[caption id="attachment_1084" align="alignright" width="370"] Barbara had no idea that PKD would impact her right when she was starting a family of her own.[/caption] Polycystic kidney disease is a family disease. Like freckles and blue eyes, there's a chance that a...
Read MoreA heart of gold
[caption id="attachment_1097" align="alignright" width="370"] A Heart of Gold stopped beating,Two shining eyes at rest.God broke our hearts to proveHe only takes The Best.God knows you had to leave us,But you did not go alone ~For part of us went with...
Read MoreServing as a voice for young people with PKD
[caption id="attachment_1093" align="alignright" width="320"] Now a college freshman, Kerilyn was diagnosed with PKD at just 13 years old.[/caption] The average teen is more concerned with school, friends and a ride home from volleyball practice than the health of their renal...
Read MoreTaking a stand to change family history
[caption id="attachment_1087" align="alignright" width="300"] When Candi started seeing family members affected by the disease, she took matters into her own hands.[/caption] I didn't want my uncle to be taken away so I just stepped in and helped. Many families carry...
Read MoreA curvy road to diagnosis
LeeAnn Hujanen went through a dramatic turn of events that led to her PKD diagnosis on April 11, 2013. Adopted as a child, LeeAnn was unsure of her biological medical history, and didn't know PKD ran in her biological family....
Read MoreLumps and bumps: One family’s remarkable transplant journey
[caption id="attachment_1085" align="alignright" width="500"] Jean Bost's successful transplant was just the beginning of her family's journey.[/caption] By Stephanie Bost My family's transplant journey began 15 years ago with my grandmother Jean, who was just days away from beginning dialysis to...
Read MoreNever lose hope
[caption id="attachment_1088" align="alignright" width="240"] Carol received a kidney transplant through a paired kidney donation.[/caption] Never lose hope. That's Carol Mainolfi's advice to anyone who is waiting for a kidney transplant. She would know – she received one after three years...
Read MoreA mother’s love
[caption id="attachment_1098" align="alignright" width="250"] Sara is an accomplished musician, songwriter and Broadway performer.[/caption] Sara Mann is no stranger to the center stage. As an accomplished musician, songwriter and Broadway performer, she has taken her rightful place in that arena on...
Read MoreSharing a kidney and a lifetime of love
[caption id="attachment_1095" align="alignright" width="215"] Aside from sharing many of the things that husbands and wives share, Larry and Jan share something very special in common: a kidney.[/caption] My husband is the best. He took those marriage vows to heart, in...
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