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Longmont, CO—Woman Talks about What It's Like to Have CMT

The bearded, long-haired doctor who met her at the emergency room in the late 1960s looked out of place in his white coat.

Fresh from medical school, he examined Marianne Nyman’s daughter with some authority — especially the high arches in her feet — and then turned to her with a diagnosis unrelated to the fever that brought them there.

“He said, ‘Oh, I see she’s got Charcot-Marie-Tooth,’ and I’m thinking, ‘OK. She’s dying,’” Nyman, 62, said.

Nyman learned she too had CMT shortly after her daughter’s diagnosis.

Three French doctors discovered the non-fatal, inherited disease in the 1800s, and named it after themselves.

The unfamiliar name makes it seem rare. However, about one in 2,500 people — about 2,000 Coloradans, given the state’s population of 5 million — exhibit symptoms including high arches.

The Charcot-Marie-Tooth Association is promoting the first national CMT Awareness Week this year, which runs from Sept. 19–25.

Nyman hopes the increased publicity helps those affected, but unaware of CMT, get diagnosed and encourages understanding in the public.

As a neuromuscular disease, CMT affects sensation and strength in the extremities. Issues related to that can cause a higher incidence of falling, which bystanders can mistake for drunkenness, Nyman said.

Once, after falling in public, she overheard a woman commenting.

“She said, ‘Look at that lady. She’s so drunk, she can’t even stand up,’” Nyman said.

Diane Covington, the CMT Support & Action Group Facilitator for the Denver area, describes the sensation in common terms.

“It’s like when your feet fall asleep, but they never wake up,” she said. “So, balance is a real issue. When we are walking and come upon a rock, our feet don’t really feel the bump. We fall because our brain doesn’t get the message. We can’t feel it in our foot.”

Her most embarrassing example of this happened in a dark movie theater. Because she could not see the floor, much less feel it, she stumbled and fell right into a man’s lap.

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