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Old 10-17-2006, 07:06 PM
leaf leaf is offline
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Join Date: Oct 2006
Location: Bristol UK
Posts: 45
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Hi there,
have you tried looking on www.Hnpp.org they also have a yahoo group,

http://health.groups.yahoo.com/group/hnpp/

and there are other CMT forums and websites that support Hnpp. there is CMTA which has a info page.

I was diagnosed 6 years ago. It is very misunderstood, and can cause much hassle. Most treatments are preventative. Braces for foot drop, splints for wrists etc. Pain is becoming more widely recognised as a symptom, but many write-ups will say it is painless, which is just too simplistic in its assesment.

There are only a few of us here with CMT/HNPP and there is a CMT forum. Some of us hang around in chat from time to time.

bfn,
jon
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HNPP - Hereditary Neuropathy with liabilty to pressure palsy.
HNPP UK Links and Info
Hnpp Info page : CMTA : CMT UK
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