Patient Comments: Charcot-Marie-Tooth Disease - Experience

Question:

Please share your experience with Charcot-Marie-Tooth disease. Submit Your Comment

Comment from: still staying active, 75 or over Female (Patient) Published: November 05

I am 82 years old; diagnosed with Charcot-Marie-Tooth disease 2 about 10 years ago. I had side effects for over 30 years; hammer toes, 8 straightened in 1985. I was diagnosed with scoliosis in 2001. An orthopedic surgeon sent me to a neurologist who did the tests. Neurologist said the mutated gene was likely in an ancestor several generations ago. I understand testing is available, but costly, and insurance does not pay. I wear leg/ankle braces, work out 5 days/week, and stretch a lot. Very important to stay positive!

Comment from: Diana, 65-74 Female (Patient) Published: May 05

I have suffered with Charcot-Marie-Tooth disease all my life but in the later years it has become extremely bad. I can only wear specially made boots, can’t buy shoes in the shops. I keep falling over as I lose my balance. I wish I could be steadier on my feet.

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