Fighting rare nerve disorder

In school, she was known as "the Band-Aid kid" because she was clumsy and would fall a lot. She looked normal and was never overweight, but she found it increasingly difficult to run. Nancy Mollner was first diagnosed with Charcot-Marie-Tooth disorder, the most commonly inherited peripheral neuropathy, when she was 16. Her first symptoms — a burning sensation in her extremities, numbness, and curled toes — appeared when she was in elementary school.

The progressive disease that gradually reduces a person's function and feeling in the feet and lower legs, hands and arms, can manifest at any age. Mollner describes it as "an equal opportunity disease," that's evenly distributed among populations around the world, affecting one in 2,500 people. Depending on the type it can be diagnosed by a blood test, an MRI or an EMG nerve conductivity test.

Now 40, Mollner, a Williamsburg resident, is a mother of three and works part-time as a school psychologist. Last year she and Jennie Overstreet co-founded a CMT support group that meets every two months to share practical advice and the social and emotional issues of living with a chronic disability. "We share our experiences and challenges," she says. "You don't know what makes it progress. It's always a guessing game, 'Is this as bad as it's going to get?' You're always going through stages of grief over losing function." The group has 30 members who are working to publicize the CMT Association's first ever national awareness week for the disorder, Sept. 19-26.

A major push of the association is funding STAR (strategy to accelerate research), which is expected to develop effective therapies for the three most common forms of CMT within three to five years. This, in turn, has major implications for the treatment of a host of related genetic disorders, including multiple sclerosis, muscular dystrophy and ALS, or Lou Gehrig's disease.

Unlike other neuromuscular disorders, the causes of CMT have been pinpointed to 40 specific gene defects that can be replicated in a lab, which can then be tested with "high-throughput screening" involving hundreds of thousands of medical compounds. "STAR is the hope for the cure," says Mollner.

No one else in Mollner's family — neither her parents nor her siblings — have the disorder. There are multiple varieties, but she has the most common, CMT-1A, which afflicts about half of those with the progressive disorder. To the casual observer, her disability is not apparent. And while Mollner appreciates that, it can also be isolating, as when someone familiar with her condition recently asked her to train for a marathon. Since the age of 19 she has used braces or "afos," ankle-foot orthoses, to help her walk.

She recently attended a CMT support group conference in Las Vegas. "It was so phenomenal. It was the first time I didn't feel alone in my experience," she said, relaying her excitement at seeing another woman gripping her fork in exactly the same way she does to compensate for lack of muscle tone. "My hands are comparable to someone in their 70s or 80s. Maybe even worse," she says, indicating a slight tremor. She can't open jars and she has started to use larger pens to write as her hands tire more easily. She has to have someone help her with buttons and to clip her nails. "If you have CMT, you will have a podiatrist," she says.

There are no specific treatments for the disease, though many drugs must be avoided as they're neurotoxic and can worsen the condition. Mainly, Mollner's an advocate for regular, moderate exercise to maintain the muscle tone she has. She's a realist too, noting that she can't regain muscle that's lost and because it's a disorder of the nerve, not the muscle itself, therapies such as the Ness L300 used for muscular dystrophy patients don't work.

Without her "afos," attempting to walk from a mall parking lot to a restaurant would probably result in a fall or her ankles giving out. "Half the battle is lifting your feet," she says. Rather than giving in to the increasing restrictions of movement that she faces, Mollner constantly pushes herself. She's prepared for the eventuality that she will eventually need a wheelchair and feels that she'll handle it better if she's done all that she can while she's mobile.

In 2008, she did the 10-K Ukrop's walk, one of her "bucket list" items. "I don't have to do that again," she notes with relief. "If I overdo it, it takes me a week to recover." Still she thinks of physical things she can do. She has ridden a mechanical bull and recently did a ropes challenge course. Next year the family is planning a trip to Yellowstone. "Exercise gives you a sense of control over something over which you have no control. It's a way of being grateful that I can still do things. You use what you have to show appreciation."

One of her concerns is whether she has passed the disorder to her children. Each has a 50 percent chance of having CMT. So far she's honored her husband, Mark, a nurse practitioner, and his wish not to limit Noah, 11, Emma, 9, and Madeline, 7, by labeling them. A self-acknowledged pragmatist, Mollner agrees for now, but thinks they need the knowledge in order to plan their careers realistically. "For example, I couldn't be a surgeon. I can't hold things still," she says.

With the children she's upbeat about the limitations CMT imposes. "I don't want the kids to see it as a death sentence. It's a pain but it's a small part of who you are. Life can still be fulfilling, joyful and purposeful."

Charcot-Marie-Tooth disorder

The name: Named for the three researchers, Jean-Martin Charcot (pronounced shar-coe), Pierre Marie and Howard Henry Tooth, who discovered it at about the same time in 1886.

What it is: A disease of the nerves that control muscles (unlike muscular dystrophy, which is a disease of the muscles themselves).Also known as hereditary motor sensory neuropathy and peroneal muscular atrophy, CMT is the most commonly inherited peripheral neuropathy. It's slowly progressive, causing loss of normal function and/or sensation in the lower legs and feet, the arms and hands. It is rarely fatal, nor does it affect life expectancy or intelligence.

How prevalent: It affects 1 in every 2,500 people or about 2.6 million people worldwide of both genders and all races and ethnic groups.

Symptoms: Usually evident first in the feet — toes curl, hammer toes, very high arches (bone deformity), weak ankles, foot drop, balance issues; in the hands, weakening muscles and tremors; burning sensation in hands and feet.

For information: Charcot-Marie-Tooth Association offers patient support, public education and promotion and funding of research;, 1-800-606-2682. Meetings held every two months at the Williamsburg Regional Library, send e-mail to Call Jennie Overstreet 804-693-586 or Nancy Mollner 220-3578.

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