Re:We need a crusade to Washington

[Guest guest]

Perhaps someone can tell them what it's like to know you may have a disease but

can't afford to find out if you do because once you have that label you can't

get new insurance. My husband has late onset CMT with negative gene testing,

and his three children are all wondering if they have it.

Every muscle pain is interpreted as a sign. His doctor says they can find out

with nerve conduction tests, which are abnormal before the onset of symptoms,

but they can't afford to be labeled.

Elinor