When Margaret Lee was 27 years old, doctors wrongly diagnosed her with ALS.
They told her that her condition had no cure and that she had two to five years to live.
“I wanted to run away,” Lee said. “I remember looking at the bars on the windows and saying, ‘Even if I did run away, I’d still have this body.’ ”
But Lee’s body aches and trouble handling clothespins didn’t stem from ALS, or Amyotrophic Lateral Sclerosis. No, a few weeks after her misdiagnosis, another specialist informed her of the real ailment, CMT.
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CMT, or Charcot-Marie-Tooth disease, is a benign neurological disorder that affects motor skills and sensory nerves. Most people with CMT, including Lee, suffer from weakness of the foot and lower-leg muscles, which can lead to falls. Lee said she has had an ankle fusion and multiple other surgeries related to symptoms of CMT.
Lee said after her true diagnosis, she committed herself to learning all she could about the disease that affects about one in every 2,500 people. She wants to share her knowledge with others to spread awareness about the condition.
Lee, the Triangle-area facilitator for the Charcot-Marie-Tooth Association, pushed the Clayton Town Council to approve a resolution designating September as CMT Awareness Month. She and another facilitator asked the Town of Cary to approve a similar resolution.
“Next time I’m going to go to the governor,” Lee said.
Lee said the popular “Ice Bucket Challenge” fundraiser for ALS is brilliant, adding that she hopes someone thinks up a similar idea for CMT.
“We can’t walk on uneven ground because we can fall easily,” Lee said. “Someone suggested we have a rolling contest to show people how we fall.”
“We can do awareness like that,” she joked.
CMT is an inherited disease. Lee said her mother had it and was also misdiagnosed originally. Neither of Lee’s daughters has shown signs of the disease, she said.
“If you see a baby walking on its toes instead of on its feet, there’s a good chance that baby might have CMT,” Lee said. “Some babies go in braces at 14 and 15 months.”
For more information about local CMT support groups or about the disease in general, go to www.cmtausa.org.