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Local woman stands up to neurological disease

Bethany Meloche could barely stand two years ago, now she's walking miles

Two years ago, at age 18, Bethany Meloche could barely take a step without the help of a walker or an arm to lean on. She had been wheelchair-bound since the middle of high school, and the neurological disorder she'd inherited from her father had twisted her feet and caused the muscles in her lower legs to atrophy to the point where even standing was extremely painful.

But that was then.

On Aug. 25, Meloche stood up to her genetic disease, Charcot-Marie-Tooth Disorder, which affects an estimated 2.6 million people the world over -- walking 18 times around a loop at Cuesta Park, tallying up a total of 7 miles and raising more than $9,000 in the process.

The money will go to the Charcot-Marie-Tooth Association, an organization founded to support those suffering from the disorder and to help fund research for a cure.

"I'm trying to cure my own disease here," Meloche, now 21, said of the fund-raising effort. According to her, researchers are currently conducting pre-clinical trials of a drug that could potentially cure the form of CMT she has. If those efforts succeed, and she is able to begin treatment in the next five years or so, she could theoretically stop the advance of her condition.

CMT, named after the three physicians who first identified it in the late 19th century, is "one of the most common inherited neurological disorders," according to the National Institute of Neurological Disorders and Stroke.

The disease is caused by a defective gene, which causes a person's nerves to degenerate over time. This degeneration leads to a lack of communication between the brain and muscles throughout the body -- typically beginning in the extremities. As time passes, the condition leads to atrophy of muscles and sometimes loss of the sense of touch.

In some cases, these symptoms are minimal and result only in a lack of coordination or an odd gait. But in more severe cases, such as Meloche's, foot deformities can occur and the lower legs can take on an "inverted champagne bottle appearance due to the loss of muscle bulk," according to NINDS.

As Meloche's case became more advanced, the tendons stretching from farther up her leg, where her muscles were stronger, began to pull on her feet in ways that her weaker muscles could not compensate for, causing her feet to develop irregularly.

She also suffered from fatigue and severe nerve pain. At one point, shortly after Meloche started college at U.C. Berkeley, it was so bad that she said she often decided to forgo meals -- it would take so much energy to go to the dining hall that she wouldn't be able to make it through a class without falling asleep.

It was around then that she decided it was time to take a break from school and undergo a pair of major surgeries on her feet.

"The surgeon described it as destroying and rebuilding my feet," Meloche said of the two procedures, which were conducted in her home state of Michigan. The surgeons cut her Achilles tendon, along with others, transferred tendons from other parts of her body down to her lower legs and feet, cut and shifted bones, and put several plates in her feet.

The results, she said, have been "incredible." Two years later, Meloche can now stand up without braces and can walk with no pain for the first time in a "very long time." She has even sold her wheelchair and the scooter she used to rely on to get around.

In addition to raising money for the CMTA, Meloche said she is hopeful her 7-mile walk will affect others who share her condition. "I hope to inspire people with CMT to reconsider what their limits are," she said. "It's easy to think you can't achieve things (when you have CMT), but that's not necessarily true."

Meloche said she was certainly inspired by the event, which she said was well-attended. Family and friends came to support her, along with members of a local CMT support group -- some of whom walked a lap or two with her on her 7-mile trek.

"It almost felt like a wedding," Meloche said. "To have everyone rally behind you and make the day all about you and your success -- it was really uplifting.

Frank Weiss, who lives in Mountain View and has a 45-year-old son with CMT, said he has been encouraged by Meloche and the progress she has made. Meloche has family and a boyfriend in Mountain View and spends a fair amount of her free time in the area, where she attends a local CMT support group.

Weiss, who has gotten to know her through the support group, said he has been impressed with the progress she has made in the wake of her surgery. "She is a remarkable young woman," he said.

To maintain the progress she has made, Meloche plans to continue walking as much as she can. In fact, she said, she is hoping to be able to walk an entire half-marathon by next year -- something she hopes will draw positive attention to her affliction.

"CMT can be a fairly depressing topic and so it's nice to have something to rally behind," she said.

Comments

Posted by Armando, a resident of another community
on Sep 6, 2013 at 6:34 pm

This is such an inspiring story!

I am sharing this link to the online CMT patient community charcotmarietoothsupport.org to inspire other patients like Bethany.

If you suffer from CMT, you may want to reach out and become a part of our community, which is one of dozens created by Bensfriends.org for patients of rare diseases.


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