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Charcot Marie Tooth Disease Type 2X

Posted , 4 users are following.

Smurf
Smurf

I'm a 22 year old male from staffordshire and I was diagnosed with CMT a couple of years ago, and I'm still struggling to come to terms with it as I find that professional help isn't as helpful as its intended. I've read every piece of information available and I understand every subgroup of the condition perfectly, however, I've never been able to find the human element in coming to terms with my diagnosis, I've spoken with a number of professionals but they can only talk to me in a medical context, not a personal one. 7 weeks ago I went through the surgery to correct the cavovarus deformity in my right foot, it was an incredibly painful experience, but from what I've seen of the result after having the backslab cast removed and replaced with a full cast I'm optimistic of a positive outcome, after which I will have the other foot done. i would very much like to discuss my experiences with other people in a similar position as myself, particularly young adults as I believe that in sharing our experiences and difficulties, it'll will be easier to overcome them with someone who can empathise as opposed to going it alone.

My emaill address is: ****

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0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    hello there, Im am 35 year old female who has just been told CMT run through her family and is awaiting to be tested I just wanted to ask what were you symptoms for your self to be tested. Im in severe pain with my fingers at all times but only just started to get pains in my feet I was diagnosed with carpel tunnel over 5 years ago and after being operated on and ound this never cured my problem i was discharged by the doctors I have been reading up on the info given but it not really in detail yes i have a high arch in my foot but presumed it was normal ?? just woundered if you symptom were similar x
  • rachael76031
    rachael76031 Smurf

    Posted

    is there any support groups for CMT in Manchester for 12 year olds?
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