Hello, my name is Susan. My journey with PKD began in my 20’s, when I was told I had a few cysts on my kidneys. I was told that having a few cysts was not unusual, and not to be concerned.

Then in my early 40’s I had an abnormal blood test result during a routine doctor visit, followed by further testing which led to being diagnosed with ADPKD. I shared this difficult news with my family, which ultimately resulted in my dad, brother and son being diagnosed with the disease.

Even though the news was difficult to hear, I do believe that being diagnosed has brought a desire to learn more about PKD, and a renewed commitment to healthy lifestyle choices to support my kidney health, and my family’s.

Some people look at me and say, "You look fine, how can you be sick?" I try to explain that the issues are on the inside right now. It's a multi-system disease. It's complicated.

Some days are tough with PKD, there's no doubt about that. Doctor visits, and anticipating test results, continue to be a source of anxiety. Sometimes living with a life-threatening disease gets overwhelming, and that’s when I head out to the mountains where I can connect with nature, and rejuvenate my body and soul.

Sadly, my dad passed away from kidney failure in March of 2020.

I am committed to honouring his memory by sharing my story and supporting my local PKD chapter to draw awareness and advocate for much needed research funding and family support for those affected by this disease.

I am grateful for the wonderful team of medical professionals, family and friends who continue to support me on my PKD journey and I remain hopeful for a future without this life-threatening disease.

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