ADPKD COMMUNITY VOICES
Want to hear from the ADPKD community?
Learn more about autosomal dominant polycystic kidney disease (ADPKD) from ADPKD Community Members. Watch inspiring videos and stories from a community of people from diverse backgrounds at different points along their ADPKD journey.
Hear from this supportive community to
help you in your own disease journey.
Topics include: Talking with your loved ones, finding the right healthcare team, importance of measuring kidney size, and more.
Patients were compensated for their time.
Lewis
“I did have my kidney size measured and it was at the recommendation of my nephrologist. He explained that having a measure of my total kidney volume would
be potentially a good marker for predicting how quickly my ADPKD would progress.”
- Diagnosed at age 11
- Likes to golf and go on hikes
Nathan
“It’s never really occurred to me to have my kidneys measured. It would have been helpful to do that, especially starting at the beginning.”
- Diagnosed at age 19
- Plays violin in an orchestra
Keonna
“Talking to other people about ADPKD it helps me, and it also helps them. If you have a support system, you know you got the disease but you don’t let the disease get you.”
- Diagnosed at age 11
- Enjoys taking her dog on walks
Eric
“If I knew what I know now, I would scream it out of the rooftops that having your nephrologist focus on kidney size and measuring it would be one of the most important things you could do for yourself.”
- Diagnosed at age 13
- Rides motorcycle and plays video games
Sarah
“The first thing I would tell somebody who was recently diagnosed with ADPKD is find your team. Find the people that are vested in you. Find your healthcare providers that you are comfortable with and have your best interests at heart.”
- Diagnosed at age 19
- Mother who enjoys dancing and singing
John
“I would recommend that someone with ADPKD has their kidneys measured because it helps them manage the progression of their disease.”
- Diagnosed at age 31
- Loves being a dad and participating in charity walks
ADPKD=autosomal dominant polycystic kidney disease.
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