A local woman is working to raise awareness about a life-threatening disease that has deeply impacted her life and family.
Since being diagnosed at age 11, Nina Young has lived with polycystic kidney disease (PKD), a genetic disorder that causes numerous cysts to grow on a patient’s kidneys, ultimately enlarging them and often leading to kidney failure.
Most of her family has had the misfortune of developing PKD, with many passing after bouts with the disease — including her mother, who was only 45 when she died.
“Six out of nine of them have passed away from the disease,” Young told OrilliaMatters. “It ran rampant through my family, and they did the best that they could with the technology they had at that time.”
There is currently no cure for the disease, and a kidney transplant or dialysis are the only methods to treat it once it reaches an advanced stage, although some treatments have been developed.
“About eight years ago, there was a treatment that finally became available after all these years of not having anything,” she said. “It stops the cysts from growing so fast … but it's not for everyone, so that's why we need to continue to do the research and (source) funding to get more treatments out there.”
Young, now 45 herself, has relied on dialysis for the past seven years, and she had to have her kidneys removed due to the disease’s progression several years ago.
Barring a transplant, Young will need to continue relying on dialysis moving forward.
She has spent many years as an advocate for PKD awareness, spearheading and participating in initiatives to raise awareness and research for the disease.
Before moving to Orillia, she founded the Cornerbrook, Newfoundland chapter of PKD Foundation of Canada — the only nationwide charity dedicated to promoting research, education, and support for those living with PKD.
Earlier this week, she attended a flag raising outside the Orillia Opera House, where the city declared Sept. 4 PKD Awareness Day,
On Sept. 24, Young will join the Walk to End PKD, which has raised over $2.1 million since 2007, with the PKD Foundation of Canada’s Toronto chapter.
Someday, she hopes to start an Orillia chapter for the foundation.
“I'm thankful everyday that the good Lord has still got me on this earth so that I can try to make a difference, and that's why I'm doing this,” Young said about her efforts.
For Young, a big motivator is her daughter, who also lives with PKD, and any grandchildren she may have in the future.
She hopes to someday see a cure or variety of treatments for PKD.
“My daughter motivates me,” she said. “This treatment that we have is great, but we always could do better. We need to keep funding, we need to keep researching and supporting the scientists … and also just get that awareness out there that … we are not alone.”
PKD is one of the most common life-threatening genetic diseases, affecting between 1 in 400 and 1 in 1,000 people, and there are thousands living with the disease across Canada.