Finding hope in the face of a debilitating disease

When Kaitlin Kostelnik-Melvin, 30, went blind in one eye a few years ago and couldn't pinpoint the cause, she felt overwhelming fear. Doctors thought she might go blind in the other eye, too.

When Kaitlin Kostelnik-Melvin, 30, went blind in one eye a few years ago and couldn’t pinpoint the cause, she felt overwhelming fear.

Doctors thought she might go blind in the other eye, too.

When she was told about the possibility she might have multiple sclerosis, she went into denial.

“I said ‘no’ and didn’t want to know anything about it,” she said.

“‘That’s not going to be me, that can’t be me.’”

The symptoms of multiple sclerosis – a long-lasting autoimmune disease that affects the central nervous system – are variable and unpredictable.

They can range from numbness to fatigue to dizziness.

But when Kostelnik-Melvin was officially diagnosed in 2013, she said she felt relieved.

“When you’re going through that, you start feeling like you’re a bit crazy,” she said.

“No one can actually see what’s going on so you can start thinking that you’re imagining it. I was actually very lucky with my diagnosis.”

The diagnosis changed Kostelnik-Melvin’s perspective on life, she said. Certain things aren’t as important as they once were.

“Work and stress, they aren’t the end of the world,” she said.

“There’s much more out there, more important things to be worried about. That’s another reason I’m doing this (fundraiser), because I’d love to be able to run around with my son for the rest of his life.”

Kostelnik-Melvin has RRMS, or relapsing remitting multiple sclerosis, which affects most people who are diagnosed with the disease.

She compares it to being on a roller coaster. She has sporadic attacks after which her body heals itself, and there are periods where the symptoms may disappear altogether.

But increased levels of stress can lead to more attacks, she said. She considers herself lucky to have only had four so far.

Last November, she and her best friend from high school, April Williams, decided to organize a fundraising event for the Multiple Sclerosis Society of Canada.

Called Keep on Smyelin (the disease targets myelin, the protective coating around nerve fibers in the central nervous system), the event will be held on April 25 at the Mount McIntyre recreation centre lounge.

It’ll feature entertainment in the form of Kevin Barr, Katie Walsh, a drag queen performance, a DJ and silent auction.

Ten per cent of the funds will stay in the territory and go to the Yukon Multiple Sclerosis Association.

Kostelnik-Melvin said she’s co-organizing the event because she wants to raise awareness of the disease, and the impact it has on people and their families.

Hopefully researchers can reverse the effects and ultimately find a cure, she added.

“The Yukon has one of the highest MS rates in Canada, so I wanted to get out there and fundraise for people who have been affected by the disease,” she said.

“But also for the friends and family who have to go through it as well. I don’t think people realize how much it affects Yukoners.

“It would be nice to bring everyone together and just meet each other and have fun.”

For Yukoners with the disease, obtaining costly pills became easier back in December.

That’s when the Yukon government announced that it would cover the cost of Aubagio, a pill found to delay the onset of physical disabilities for people suffering from RRMS.

There are an estimated 100,000 Canadians with multiple sclerosis, one of the highest prevalence rates in the world.

Kostelnik-Melvin said there are theories about why that is, including vitamin D deficiency, environmental and hereditary factors.

For more information or to purchase tickets, you can email Kostelnik-Melvin at

smyelinwhitehorse@gmail.com.

Contact Myles Dolphin at

myles@yukon-news.com

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