Re: CMT is genetic, acquired at conception

October 10, 2006

EdM,

My understanding, based on a conversation I had with a neurologist

some years back, is that not everyone who has the genetic marker

develops the various symptoms of CMT. Some may have a symptom like

arched foot, or clawed toes, but have no notable daily impairments

throughout their life time. This has a French name, which I'll

probably mispell: " forme frusche " which means you have not only a

genetic marker but a physical marker (you may never develop the full-

blown symptoms). To say that a person has a " disease " or " disorder "

when what they have is not disabling in terms of everyday activities

is a little bit stigmatizing, don't you think? To insist that everyone with the

genetic marker is born with CMT is parsing the language to the extreme extent.

I'm sorry if this offends, but I cannot tell people I was born with the

disorder, I was born with the genetic propensity for the disorder and later

developed multiple symptoms.

Sherry

October 11, 2006

Hi Ed,

Right on. CMT is in our DNA. Yes, that happened when Mom and Dad went

to Palm Springs, December 1951, and 'made me' (lol, but true. I was

born the following August, my baby footprint shows a perfect little

foot I didn't develope symptoms until age 7, and was officially

diagnosed at age 10, which is why I say I've had CMT since I was 10, my

diagnosis.

I consider myself lucky to have an early diagnosis, to have received

excellent medical care, and to have a lifetime of living with my body

and learning how to manage symptoms.

Carpe Diem is my thought when I wake up each morning with another day

to be of service.

~ Gretchen

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