Cutting-edge care for a hereditary kidney disease

Doug Munkley (pictured far left) came up with the idea to fundraise for polycystic kidney disease research through cycling.

When Laura Cousens was diagnosed with polycystic kidney disease (PKD), it didn’t come as a shock. Her father, two uncles and two cousins had all received the same diagnosis.

“PKD is quite prevalent on my father’s side of the family,” reveals Laura.

PKD is a genetic disorder that causes cysts to grow on the kidneys, making the kidneys larger than they should be. The cysts also damage the tissue that makes up the kidneys, which leads to a decline in kidney function. Approximately 50 per cent of those with PKD will experience kidney failure by age 60 and will need a kidney transplant.

While Laura was seeking the best person to help with her PKD, her family recommended Dr. York Pei, a staff nephrologist at Toronto General Hospital at University Health Network (UHN) and senior scientist at the Toronto General Hospital Research Institute.

“I got quite sick and asked my cousins about their physicians,” explains Laura. “They said, you have to go to Dr. Pei, he’s the only person to see.”

More than 12 years later, Laura still sees Dr. Pei every six months to manage her condition and any related complications.

“Every time I have my session with him, I feel really optimistic and positive because I know he’s got a solution for whatever it is that might arise,” says Laura.

Laura Cousens was diagnosed with polycystic kidney disease over 12 years ago.

Combining research excellence and exceptional kidney care

The Kidney Foundation of Canada recently recognized Dr. Pei’s outstanding contributions to PKD research and care with the 2020 Medal for Research Excellence. Through his work, Dr. Pei identified genetic factors underlying PKD. He is using this knowledge to develop new diagnostic tests and targeted therapies. Dr. Pei’s work has been possible thanks to donor support.

“You know you are getting the absolute best care from Dr. Pei,” asserts Laura. “I think it’s because he’s a clinician and a researcher. You’re not just going to a physician who’s a nephrologist. You’re really getting the benefits of both.”

Dr. Pei founded the Centre for Innovative Management for Polycystic Kidney Disease at UHN, which follows more than 500 individuals with PKD. About 95 per cent of the Centre’s patients are involved in research.

“I have opportunities to be on clinical trials that I would not have access to if it wasn’t for Dr. Pei, his team and his extensive network of other researchers,” describes Laura.

Thanks to Dr. Pei’s research, Laura was one of the first patients in Canada to receive sclerotherapy to remove some of the larger cysts on her kidneys.

“After they did two rounds of sclerotherapy, I instantly felt better,” shares Laura. “I knew how privileged I was to be Dr. Pei’s patient and that I was able to have this procedure that made such a difference in how I felt every single day.”

Bike to the Moon

When Laura and her husband, Doug Munkley, learned that Dr. Pei’s research efforts were limited by funding, they were shocked.

“I was heartbroken because I’ve been such a beneficiary of the funding and the research,” acknowledges Laura. “I said this can’t be happening because he’s doing leading-edge research that will impact so many people across Canada.”

In 2016, Doug came up with the idea to fundraise for Dr. Pei by cycling 485 kilometres along the Bruce Trail. Through Bike the Bruce, they raised $12,000 for PKD research.

“We had a heck of a good time, but we decided it wasn’t sustainable,” laughs Doug.

The next year, Bike the Bruce grew to become a national initiative called Bike to the Moon. This annual fundraiser aims to collectively bike the distance to the moon in support of PKD research.

“We were focusing not just on raising money for PKD research, but we were also trying to raise awareness because it’s kind of a forgotten disease,” explains Doug.

Since its first year, Bike to the Moon has raised more than $100,000.

“It’s been a huge part of our life, to be able to try to support Dr. Pei because I know he’s added to my quality of life,” adds Laura.

Living healthier, longer with PKD

Laura’s family members with PKD have needed a kidney transplant or lost their fight with this condition around age 60. However, Laura is on a different path.

“I’m on the cusp of 60 and I feel great. Most days I don’t even notice that I have kidney disease other than I take some medications,” remarks Laura. “I think that my health today is where it is because of the interventions that Dr. Pei has taken.”

Laura understands that the care she receives from Dr. Pei is out of the ordinary. Despite having many patients and a busy schedule, Dr. Pei is just a phone call or email away if she ever has any health concerns.

“This isn’t just research for him. I feel like he genuinely, really cares about all of his patients,” says Laura. “I just feel so fortunate to be in his care.”

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