Fighting the unknown

Fighting the unknown
Local fundraiser to collect money for low-profile disease

by Laura Cummings

For Orléans resident Lynne Horne, the devastation of a relatively-unknown kidney disease has brought new meaning to the phrase ‘all in the family.’
Horne – who was diagnosed herself with Polycystic Kidney Disease (PKD) at the age of 25 – lost both her mother and grandfather to related complications, while three of her other five siblings have either received a kidney transplant, are on dialysis or suffered a brain aneurysm caused by the disease.

“It hits everybody different,” she says. “(Doctors) don’t have an explanation. This disease is such a mystery to them.”

Horne admits when she was initially diagnosed, she “didn’t really think much of it” – her mother, at that point, had only been suffering from high blood pressure related to PKD. Until the age of 45, “it was slow-going,” Horne continues. “It got really aggressive (in my late 30s).”

After going into total kidney failure in 2006, she received a transplant from her husband the following year, with her kidney growing to 28 centimetres – on average the organ is around five centimetres – by the time it was removed.

Though Horne still can’t return to work full-time because of a lack of energy and medication, “I’m thankful. Life on dialysis is not a fun thing. There are thousands of people waiting for a kidney. (But) my life is still not the same.”

It’s the ongoing connection to PKD that prompted the east-ender to get involved with the Polycystic Kidney Research Society of Canada, including helping to organize the Ottawa chapter’s first-ever fundraiser at Orléans’ Liam Maguire’s this weekend.

Beyond the medical issues, PKD is not a well-known disease, Horne explains, creating the need for the Saturday, May 30 event, which will feature local band Blackboard Nails and a silent auction.

“How can there ever be a cure for the disease that’s not recognized?” she questions. “I haven’t met one person who knew what PKD was. That’s ridiculous. That’s why I’m trying to get the word out there. PKD can affect anyone; it’s not always genetic. The more information you’re armed with (the better).”

Any funds collected via this weekend’s event will be funnelled into the Society – which is currently undergoing a name change to the PKD Foundation Canada – and into research in Canada, continues Julie Chamberland, coordinator and co-founder of the group’s local chapter.

“The money is for research into finding a cure,” she adds.

The local group was founded, Chamberland recounts, after her experiences with her nine-year-old daughter being diagnosed and realizing the lack of awareness surrounding the disease.

Though it affects one in 500 people in different age ranges, “no one knows about PKD,” she says. “If there’s no awareness, there’s no support. In order to do this in Canada, there has to be a starting point. It makes you feel very lonely as a family (not to have that).”

Chamberland – who worked since July to bring the group together, officially launching in January – explains the chapter has already held smaller events, including a bake sale. The next step, she continues, may be joining the annual walk for PKD held in both Toronto and Vankleek Hill each year, which most recently raised $42,000.

“(Our group is) still relatively new,” Chamberland continues. “But we’ve made a lot of progress.”

There’s a need especially for localized support when it comes to learning about research and clinical trials, she explains.

“You’re your own advocate at the end of the day,” Chamberland adds. “Knowledge does empower you.”

For more information, please visit www.pkdcure.org or e-mail Julie Chamberland at ottawapkdchapter@gmail.com

http://www.eastottawa.ca/article-342470-Fighting-the-unknown.html