CMT specialist in Canada

[Guest guest]

I have been reading all the postings since becoming a recent member of

; all have been very helpful, in various ways. As I described in

my introduction, my son, now 21, has CMT1 (diagnosed at age 16). My

son would very much like to see a CMT specialist, as he would like to

know as much as possible about HIMSELF and his condition... My husband

and I are prepared to take him wherever necessary. Obviously, for

insurance purposes, it makes more sense for us to look first in Canada

for the best CMT resource(s) and most knowledgeable and up-to-date

centre(s)/clinics/hospitals/doctors etc. However, we are prepared to

go to the US if need be. We await your replies.

Thank you.

Debbie

PS when first diagnosed, we were referred to the GF Strong Rehab

centre in Vancouver. My son was absolutely spooked by the experience,

and I think he has been 'running scared' from his condition ever

since... (He is not severely disabled, but definitely experiencing

difficulties with his feet and, sometimes, his hands.) He appears,

naturally, not have a great deal of faith in the medical 'system'. I

agree, his experiences have, generally, been less than postive,

although our pediatricians and GP's have always been amongst the best,

and well-respected by others in the community. In our son's case we

are looking for somebody who is as knowledgable as possible about CMT;

up-to-date; informed about ongoing research; and personable -

hopefully somebody who our son finds he can trust, believe, and

respect - and access without a six-month waiting period! Perhaps this

is a tall order; but there may be somebody, and if so, we would like

to know who he/she is!

Thanks again.