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.
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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Cynthia Conway
I found out I had polycystic kidneys in 1995. I've been doing dialysis three times a week for five years. I have three grown children who also have PKD. My firstborn is 47 and his three kids also have the...
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Margery Garcia
[caption id="attachment_9408" align="alignright" width="250"] Margery, her husband and her son.[/caption] I was born and raised in the Philippines. My mom and dad are both Filipinos. I moved to USA in 2008 to work as an occupational therapist. I work in...
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Mark Simowitz
[caption id="attachment_9307" align="alignright" width="250"] Mark Simowitz[/caption] I am 58 years old and I am the first in my family to have PKD. I found out in 2005 while taking my college-age son to see his orthopedic doctor. I asked the...
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Amber Paxton
I was diagnosed with ADPKD through ultrasound in September 2016 at age 22. My father had recently been diagnosed as well, following kidney issues, and his lack of a relationship with his father made him unaware of the disease. My grandfather lives...
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Carol Soha
I am lucky when it comes to PKD. I didn't start to go into failure until my early 60s, and then before going into complete failure, I received a kidney from a living donor. This donor was John, my daughter's...
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Sharon Tomlin
[caption id="attachment_9148" align="alignright" width="300"] Sharon's nephew, Daniel, and his children, as he awaits a transplant.[/caption] My husband's family has a long history of PKD. My husband, age 72 now, is one of the fortunate ones and received a kidney transplant over...
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Laranico Wood
When I was diagnosed a few years ago, all I could think of was that I'd have to go on dialysis. My dad has PKD and he's on dialysis. My doctor told me if my dad is on dialysis 9 times out...
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