Community Stories

Welcome! In these videos and articles, meet a group of individuals who either live with polycystic kidney disease or care for someone who does. They share personal stories and insights from their journeys following a PKD diagnosis.

Length: 7:59

Journeys and Lives with ADPKD

Tamara, Noelia, and Lisa share their ADPKD journeys, lifestyle changes, advocacy efforts, and how to stay positive.

Length: 3:49

Lisa’s 36-Year ADPKD Journey

Lisa recounts her 36-year journey with ADPKD, and the importance of self-care, family support, and faith.

Length: 4:23

ADPKD and a Second Chance

Tamara shares how she used her "second chance at life" through transplantation to advocate for others.

Length: 4:35

Living Fully with ADPKD

Noelia shares how a life-changing transplant allows her to cherish every moment with her family and advocate for others.

Length: 5:45

Guilt During the PKD Journey

Valen and her family describe the guilt they felt while traversing Valen's lifelong PKD journey.

Length: 3:35

Becoming the Inspiration I Needed

Valen shares her experiences growing up with PKD and wishing she had examples of thriving adult PKD patients she could look up to. As an adult, she has made it her mission to create a kidney community where people can share their journeys.

Length: 4:50

CKD: Emotional Roller Coaster

CKD can strongly affect one’s mental health. Steve chronicles his emotional highs and lows as he navigated his disease.

Length: 3:26

Finding a Positive Outlook

Valen shares how she lives every day with gratitude, which helps her maintain a positive outlook in life even in her darkest days.

Length: 3:24

Self Care While Being a Caregiver

Noah talks about the importance of self-care while taking care of a sick loved one.

Length: 3:51

Taking Control of My Journey: Self-Advocacy

As a patient on a lifelong PKD journey, Valen learned along the way the importance of advocating for herself.