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.
Kim March
I was diagnosed with ADPKD at 15 years old following a snowmobiling accident that caused me to rupture a cyst. I am currently 31 years old, working as a firefighter/EMT and going to nursing school while working hard to raise...
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Taylor Stearns
[caption id="attachment_11538" align="alignright" width="300"] Taylor and her mother[/caption] PKD has caused my family so much hardship. Growing up, I watched my mother suffer as her health declined. She was always in so much pain, never wanting to leave the house because...
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Reina Stevens
PKD runs in my family. My grandmother ultimately passed as a result of complications with the disease. My mother was diagnosed but it was very well managed until 2006. Within 6 months her kidney function dropped to under 10%. Her best...
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Kristen Simms
[caption id="attachment_11534" align="alignright" width="225"] Kristen's children, Eli and Presley[/caption] My name is Kristen Simms. I am a 26-year-old military wife living in Northern Virginia with two children affected by ARPKD: a four-year-old boy, Elijah and a one-year-old girl, Presley. With...
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Nicole Cardin
[caption id="attachment_11524" align="alignright" width="300"] Nicole and her granddaughter[/caption] My paternal grandmother, Helen, is the first that we know of who had autosomal dominant polycystic kidney disease (ADPKD) in the family. We only figured it out when others in the family...
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Taylor Karlo
[caption id="attachment_11474" align="alignright" width="273"] Taylor at one of her volleyball games[/caption] My name is Taylor Karlo, I’m 17 years old and I’m a senior at Olentangy Liberty High School in Powell, Ohio. I am also a volleyball player and I’m...
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Debra Dai
[caption id="attachment_11474" align="alignright" width="300"] Debra and her eldest daughter[/caption] My name is Debra and I’m from New York. I was diagnosed at the age of 22 during my pregnancy with my first child. At the time, my mother had PKD...
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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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