[Nancy Mollner is the co-facilitator for the Williamsburg, Va, area CMTA Support and Action Group.]
When someone hears of Charcot-Marie-Tooth Disorder, they often think it’s a dental problem.
“Everyone thinks that,” said Nancy Mollner, who was diagnosed with the condition in her teens.
But CMT, has nothing to do with teeth. It’s a hereditary, progressive condition of the peripheral nervous system. Those are the nerves that control movement in the arms, hands, legs and feet. Motor nerves are affected, causing those with the condition to have challenges walking, writing and performing ordinary daily tasks.
It was named for the three physicians, Jean-Martin Charcot, Pierre Marie and Henry Tooth, who discovered it in 1886. Since then it has grown in occurrence, with an estimated 2.6 million people diagnosed with it worldwide.
Mollner explained that the condition is often confused with Muscular Dystrophy. However, while some of the symptoms may be similar, the physiology behind the disorders are quite different. CMT is a disease of the nerves, where muscular dystrophy is a disease of the muscles themselves.
It is largely hereditary, although no one in Mollner’s family has it. The fact that it is so prevalent within families is worrisome to Mollner, who is the mother of children ages 7, 9 and 11. None of them have shown symptoms of the condition, and by choice, she hasn’t had them genetically tested. There is a 50% chance that her kids have it.
As a child, she recalls being the “band-aid kid.” She often tripped or fell, suffering contusions and several skinned knees. She finally was diagnosed when her toes began to curl. Since, the condition has progressed. She wears orthotics to help her walk, and she has difficulty writing, opening jars and fastening.
She suffers from the most common type of CMT, which she said about half of those diagnosed have. Because there are many types of the condition, symptoms and severity vary.
To get the word out about the condition, Mollner and Gloucester resident Jennie Overstreet started a support group last year which meets twice monthly at the Williams-burg Regional Library. The group regularly draws about 15 people who are dealing with various challenges of the disorder.
“When you have a rare disorder you can feel isolated and alone,” Mollner said. “I was looking to share experiences with other people and I wanted to gather more information.”
Next week is National CMTA Awareness week and she hopes it will allow people to learn more.
There are no drugs yet available to help those with the condition. That’s why Mollner realizes that as it progresses, she may become more limited. At age 40, she has already formulated her own “physical bucket list.” It includes skiing, aerobics a trip to Yellowstone next year, and one day taking a walking tour of Europe.
“ If I do end up in a wheelchair one day, I want to look back and say that I did everything I could when I could.” she said. “I want to make the most of what I have when I have it.”
Want to go? The support group meets bimonthly, 2:30-4:30 p.m. on Saturdays. Call 220-3578 for more information or visit our Online Community.