Build Your Community

I think people would be surprised if they knew how many PKD patients live close to them. I spent a little over a decade after being diagnosed at age ten without ever knowing or crossing paths with anyone outside my family with the disease. The only reason that changed...

The Exceptions

When I was first diagnosed with PKD at ten years old, my nephrologist told my mom and me, “You will probably follow your same family history and not be affected until your late 40s to early 50s,” but my mom and I are the exception to this statement. Looking back at...

How I Honor My Donor

Actions speak louder than words. A mere “thank you” to my living kidney donor, Sally Robertson, seems inadequate as I’ve been afforded the past 13 years and 8 months of living because of her decision to donate life. I choose to thank and honor Sally by the way in...

Nothing is a Coincidence

Today wraps up 31 Days of PKD Challenges. It has been fun to see the heightened PKD awareness being spread on social media the past couple of weeks. We should be proud of the difference we’ve made this month and strive to keep that momentum going. On this last day of...

Everyone Has a Story

We all have a story. Whether your PKD is a spontaneous mutation, hereditary, ADPKD, ARPKD or you are a caregiver to someone who has PKD, you have a story to tell. Some of us are more private than others or too sick to share, and that is OK. When I speak about my...