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.
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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Nancy Salkeld
[caption id="attachment_9116" align="alignright" width="300"] Nancy and her sons[/caption] In 1996, during exploratory surgery for endometriosis (which would not be confirmed until 15 laters), my surgeon found three fourths of my liver to be covered with cysts. I went through a...
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Cynthia Christiansen
I participate in the Walk for PKD in memory of my father! He passed from complication of PKD eight years after his kidney transplant. I also walk with the hope to find a cure to support my advancing disease and my children.
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Mary Suydam
I have ADPKD. I was blessed to receive a life-giving transplant nearly 6 years ago that gave me a second chance at life. I walk for my mother, who passed away way before her time. I walk for all the PKD patients who wait for a transplant....
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Jacque English
I was diagnosed with PKD in 2003. I manage my disease with blood pressure medication and regular trips to my nephrologist. My kidneys are getting larger and my function is beginning to decline. Seven years ago this August, my mom...
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Emily Stoll
At my summer family reunion vacation this year, I organized a Party for the PKD Foundation that was sponsored through a Thrivent Financial Action Grant. Through the grant, I got $250 that I used to purchase refreshments for the party,...
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