Increase in CMT in last 50 years

January 24, 2002

In a message dated 1/24/2002 7:44:25 PM Pacific Standard Time,

liliwigg@... writes:

> the fact that in the last 50 years (1951 to 2001) there has been a

> 62.5% INCREASE in the number of CMT cases alarms me

:::::::::: THUD:::::::::

I just fainted! I had no idea ! And to think of that doctor that

thought CMT was a case of syphilis...

jenny

January 25, 2002

I have been doing some background work for a presentation I am giving,

and the fact that in the last 50 years (1951 to 2001) there has been a

62.5% INCREASE in the number of CMT cases alarms me. Even with CMT

affecting about 4% of the population, a fifty year increase like this,

with a disease like ours demonstrates research and treatment is lagging

far behind. Granted, the 'boomer generation' grew up and had their

children: nonetheless, why do we have professionals who have never heard

of CMT; or why can't people get a definite diagnosis; or why can't those

of you with AFO dilemma's get what you need done -right- AND now?

Something's wrong. That's why we, at the Foundation, are stepping

up Awareness big time. More Awareness for CMT = more dollars for CMT

Research, NOT clumped in with other neuromuscular diseases....CMT needs

its own lobby, and I am working for this. If anyone is interested in

'coming along' please email me privately.

~ Gretchen

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