My name is John Burns. I’m 58 years old, and I was diagnosed with ADPKD when I was 43. No one else in my immediate family has the disease. I had a cerebral aneurysm rupture out of the blue which led to the diagnosis. I hadn’t heard of the disease before and I remember asking the doctor who delivered the news, “What was it that I could do to fix it?” Hearing that there isn’t a cure was difficult.

Since then, I’ve found out that all three of my adult children also have the disease. That was difficult to realize. I know in my brain there was nothing I could do to change that but my heart is heavy nonetheless. The reality is that every grandchild I will have has a 50% chance of contracting PKD. It’s the gift that keeps on giving. Still, I’ve had a wonderful life and will continue to do so while doing what I can to minimize PKD’s effects. I continue to travel and enjoy time with my two grandchildren. I recently started taking tolvaptan in hopes of slowing down the progression of the disease.