Walk to End PKD brings patients, loved ones to DDO with goal of ending the genetic disease

Those living with polycystic kidney disease (PKD) – and their loved ones – walked Sunday to raise awareness and funds for treatments and a cure.

The annual Walk to End PKD took place at Centennial Park in Dollard-Des-Ormeaux – one of five walks taking place this month across Canada.

“You have to have hope for the future,” said PKD patient Amanda Marra. “And I think that’s the most important thing is that we’re able to work together.”

The walks are the PKD Foundation of Canada’s signature fundraising event.

“The progress in diseases like polycystic kidney disease can only be made through the contributions of foundations like the PKD Foundation and events like this really generate the funds that allow researchers to move things forward,” said Dr. Prosanto Chaudhury, the medical director of transplantation at Transplant Quebec and a transplant surgeon at the MUHC.

Polycystic kidney disease is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure.

“Once it’s diagnosed in a family, it’s something that looms over one … that it is eventually going to affect you as well. So it’s a very difficult disease from that point of view,” said Chaudhury.

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According to the PKD Foundation of Canada, one in every 500 Canadians are affected by the disease, making PKD one of the most common life-threatening genetic diseases.

“In my case, which is the case of many patients, I have both my two kidneys that I have cysts and I also have a lot of cysts on my liver,” said Laura Zuanigh Marra.

“In my family, there’s my mom, there’s my cousin Louisa. In my family, there’s my daughters, two of my daughters, my older and my younger, are also affected by PKD. And so we’re hoping that this will help accumulate funds for research so that we could have some hope for the future.”

It’s that hope that brings people like Luisa Miniaci to the Walk to End PKD every year. Nothing could stop Miniaci, who’s been advocating for years for more awareness on the disease and the importance of organ donation, from participating in the event – not even the life-saving double transplant she just received.

“I like to think that because we raise awareness in the community and across Montreal that people sign their donor cards and because of that, a beautiful person donated and gave my wife a new lease on life and we’re going to keep on fighting for all the other PKD patients that are looking for a kidney or a liver or both,” Miniaci’s husband Pietro Di Leo.

Other Walks to End PKD took place in Halifax, Guelph and Ottawa earlier this month. A walk in Toronto is scheduled for Sept. 29.

“It’s wonderful to see the number of people who come out because they either have PKD, they know someone with PKD or they just want to help people with PKD,” said nephrologist Ahsan Alam, the director of the MUHC’s PKD clinic. “We need events like this to raise awareness, to understand that there are people out there who are dealing with a serious illness and there’s options or hope that we can do something more about it.”