Superheroes among us: Breaking the silence on polycystic kidney disease

Superheroes among us: Breaking the silence on polycystic kidney disease

One man’s journey from diagnosis to advocacy and how the PKD Foundation of Canada is inspiring a stronger, more connected PKD community

It’s a common, serious genetic condition but when Nick Ashawasega was diagnosed with polycystic kidney disease (PKD) at age five, he felt alone. As a child of Indigenous and Persian heritage, he saw it as one more thing that set him apart and hid his diagnosis until well into adulthood.

Today, the 36-year-old openly shares his story, believing that knowledge is power and building awareness is crucial.

When he spoke at the PKD Foundation of Canada’s annual Walk to END PKD a few years ago, a moment he’ll never forget brought that belief to life. After his speech, a young boy who also lives with PKD called him a “superhero.”

Ashawasega, a married father of two, was moved to tears. “When I was a kid, I had no one to look up to,” he says.

PKD causes fluid-filled cysts to grow in the kidneys, reducing kidney function over time. There are two main forms. Autosomal dominant PKD (ADPKD) is more common. It often impacts multiple generations in a family since a parent with ADPKD has a 50 per cent chance of passing it on to their children. Autosomal recessive PKD (ARPKD) is rare and more severe, usually affecting infants and young children. Many people with PKD will eventually need dialysis or a kidney transplant to survive.

Today, Ashawasega’s kidney function is close to 100 per cent. He credits the PKD Foundation of Canada as a steadying force in his journey. “It’s been an anchor,” he says, “a reliable source of information, comfort, and connection.” Through resources like the private online community MyPKD.ca, the foundation brings people together, advocates for better care, and supports research to improve treatment.

PKD affects one in every 400 to 1,000 Canadians.

“PKD looks different for everyone,” reports Michelle Lynne Goodfellow, communications and engagement manager with the foundation. “Some people live well for decades, while others face serious complications earlier in life. PKD is often invisible. People may appear healthy while managing pain, fatigue, mental health challenges and complex care.”

Education, early care and ongoing research can improve quality of life and outcomes. Research funding matters.

“Since the foundation was founded 30 years ago, a lot has changed,” Goodfellow says. “Ten years ago, the first drug demonstrated to slow cyst growth was released. Recent research has shown ways to better manage PKD. Patients diagnosed with PKD today have a significantly more supported health journey.”

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