September 20, 2023

Voices of PKD: Elyse Gawley, Coquitlam BC

I was diagnosed with PKD at the age of 21. If I had to describe my reaction to my diagnosis in three words, they would be: fear, acceptance, and anger.

Fear, because I already knew a lot about PKD through my dad and my uncle, who both have PKD. I knew that having PKD meant that dialysis and/or kidney transplant were in my future. I also knew that this diagnosis would mean that any biological children I had in the future would also have a 50/50 chance of having PKD.

Acceptance, because I had known since the age of 11 that there was a 50/50 chance I had PKD, and I saw my dad go through a very successful transplant. So, I had already been prepped for a decade that this could happen.

Anger, because most people in my community had no idea what I was growing through. It’s hard to find people who can relate to being diagnosed with an incurable disease. It affects many decisions that you have to make in life. It can be hard to relate to others, for sure.

Since I last shared my story with the PKD Foundation of Canada community, my kidney function has decreased slightly. I tried the drug Tolvaptan, but had to go off it pretty quickly. I hope to try again in the next year.

I also decided to leave my career (that had great health benefits) to go back to school. My job was very demanding, and I realized that I could no longer keep up at the same level that I once could. This was hard to accept. But I’m now in school again, and doing well. My health seems to have stabilized a bit, as well, now that I have less stress and more sleep! This has made me feel hopeful.

Thankfully, Jeff (Robertson, Executive Director of the PKD Foundation of Canada) has been there for me during my hardest times. So has my entire kidney team at St. Paul’s Hospital in Vancouver (especially Dr. Farrah, and Judith Marin, my pharmacist). I’m very grateful that I live close to such great care!

Elyse_1_03.png One of the most challenging things about having PKD is not knowing when I’ll go into renal failure. It’s a waiting game! The thing that’s given me the most comfort or hope on my PKD journey is my dad, because he had a successful kidney transplant in 2001.

On PKD Awareness Day, September 4th, I was thinking about my family members that have PKD: my grandfather, who passed away in 1992 from complications; my dad; my uncle (who has his transplant in 2012); and my cousin, Brynn.

I wish more people understood that PKD affects a lot of Canadians, but it’s still very under-researched. In 2023, there is currently only one option to potentially slow the progression of the disease (and only for a small portion of patients). We need more funding and research so that patients can have options!

One thing I want to feel this September during the Walk to END PKD campaign is hope. Hope that the one day we will have a cure!

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