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.

ADPKD Advocate


“For those managing a new diagnosis, I encourage you to share your journey—it can help benefit your family and others.”

  • Missy Franklin, five-time Olympic Gold medalist and ADPKD advocate
  • Richard, her father, diagnosed with ADPKD
Community Voices Videos: Lewis
ADPKD Community Member


“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
Community Voices Videos: Nathan
ADPKD Community Member


“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 
Community Voices Videos: Keonna
ADPKD Community Member


“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
Community Voices Videos: Eric
ADPKD Community Member


“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
Community Voices Videos: Sarah
ADPKD Community Member


“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
Community Voices Videos: John
ADPKD Community Member


“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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