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Shelton Resident Raising Funds, Awareness Of Rare Disease

by Ethan Fry | Aug 26, 2013 6:18 am

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Posted to: Shelton

CONTRIBUTEDFor nearly a decade, Shelton resident Michele Kekac has been struggling with “the biggest disease no one has ever heard of.”

Kekac suffers from Charcot-Marie-Tooth (CMT) Disorder, a progressive neuromuscular disorder estimated to affect 2.6 million people worldwide.

She was first diagnosed with the condition in 2005, after dealing with pain in her feet for years.

“I struggled with pain in my feet for years,” she said. “Every single step I took was hurtful.”

A New Yorker at the time, she assumed the discomfort was just due to having to walk a lot.

But it kept intensifying.

After a year’s worth of doctor’s appointments and tests, she was diagnosed with CMT — though at first she knew next to nothing about the disease.

“It’s not a condition you’re aware of,” Kekac said. “Even when you’re diagnosed you don’t know what it is.”

A hereditary condition that affects the nerves which control muscles, CMT patients slowly lose normal use of their extremities when nerves that control certain muscles degenerate, causing the muscles to weaken, according to the Charcot-Marie-Tooth Association.

There’s no cure, but physical therapy and surgery can be beneficial — though painful, Kekac said, a veteran of surgery herself.

“They literally broke my feet,” she said of her own surgery. “They had to break them and then reset them.”

Still, the symptoms — chronic pain, fatigue — get worse. At this point, she said she can’t even stand for any prolonged period of time.

Kekac tries to stay as active as possible, walking to the extent that she’s able, but also has to rely on a cart to get around.

CONTRIBUTEDThankfully, she’s also able to rely on her husband, Shelton Police Officer John Kekac.

“Even small tasks I have — the laundry he does, because it’s downstairs,” Kekac said. “And he has to do the grocery shopping.”

“It’s an invisible disease,” Kekac said. “If you look at me you’d never think there was anything wrong with me. It’s not something that shows. I’ve been yelled at on the street for using handicapped parking spots.”

She can’t work full-time either, so she’s trying to take advantage of that fact by organizing an event next month to raise awareness of the disease — and funds toward its cure.

Research to develop a medication for the disease is currently in the works, but an estimated $25 million is needed to fund the work.

While not a cure, the medication would help slow the progression of CMT in the people it affects.

“As much as I’ve progressed, that would be a blessing,” Kekac said.

The event, “A Slice of Hope For CMT,” will take place Sept. 13 at 6 p.m. at the White Hills Fire House, 2 School St.

The fundraiser will feature pizza and assorted dessert pies prepared by local restaurants, as well as a DJ and raffles.

Tickets are $15, with all proceeds going to the CMTA STAR program, which investigates how human skin stem cells can be used to treat CMT.

Click here to see the Facebook page for the event.

Earlier this month about $1,600 had been raised toward the event’s $5,000 goal.

“I’m hoping that we’ll raise the full amount,” Kekac said.

To learn more about Kekac’s story, click here to visit her blog.

And click here to make a donation to the event.

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