Condition's description unduly negative, dad says

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Condition's description unduly negative, dad says

Windsor Star

http://www.canada.com/windsorstar/news/letters/story.html?id=1d371c91-

2d8c-4e1a-a9f1-9cb4915359de

Re: Grant Underwrites U of W Neuromuscular Research, Nov. 14.

As the father of an adult son with Charcot-Marie-Tooth disease I was

disappointed by what I felt was an alarming description of the

symptoms and prognosis of the ailment.

Phrases such as " potentially fatal, " and " very painful " may be

frightening for parents of children diagnosed with CMT.

CMT is not considered a fatal disease. People with most forms of it

have a normal life expectancy and can live productive lives.

My son was diagnosed with Type 1 CMT at 12. He is now in his mid-30s,

has a physically demanding job, an active social life, is very

mobile, has never worn orthopedic devices and has had no corrective

surgery. He has adjusted to a minor foot drop problem.

Progression of the disease is uncertain, and that's a worry. I have

met adults with CMT whose productive years have been cut short by

advanced muscle deterioration in the hands and feet. To his credit,

my son remains positive. I will not share your article with him.

For medical information, there is the National Institute of

Neurological Disorders and Stroke. And the Charcot-Marie-Tooth

Association provides support, education and research promotion.

FRANK WHITE

Windsor