CMT Friends: Does anybody with CMT on... - Charcot-Marie-Too...

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CMT Friends

goldenmist profile image
5 Replies

Does anybody with CMT on here live in the Birmingham area?

Would be nice to find anybody to chat with and get to know....James

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goldenmist profile image
goldenmist
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5 Replies
indianahawkeye profile image
indianahawkeye

Hi James, I live in Redditch, but I work in Victoria square Birmingham with the aid of two support workers provided through Access to Work.

I was only diagnosed 3 years ago, but by then I had had 5 major operations on both feet to rebuild them. It was only after I was referred to the rehabilitation centre in Selly Oak that the consultant there knew about CMT and was able to refer me to a Neurologist at the new QE hospital stating that I had all the sign of having CMT.

I have lived with all the deformity since my mid 20s but until 3 years ago no one could really tell me what I had.

Regards

Markus

hi, yes a brummie here, steve 57 married from shard end. found out i had cmt when i was 16 and just got my first wheelchair. nice to know i,m not the only one in brum, take care.....

steve........

splinter21 profile image
splinter21

hi, i`m student studying in London from india i`m suffering from HMSN type 2, came to know about the disorder few months back with no cure, I am getting into depression that all of a sudden i`m liming and can't walk up the stairs without any support, all your friends laughing at you the way u walk and i don't want myself to be in a wheel chair please help.

CMTSECRETS profile image
CMTSECRETS in reply tosplinter21

Splinter21, Be strong, continue looking after your future education no matter what how health will be, having something to “distract” from what you’re going true can be very helpful without ignoring it of course, I’m afraid you’ll find easier to avoid doing this that get you tired and that makes you struggle, avoid it and you’ll adapt doing it other ways, it’s important to take it seriously so that you’ll manage it and understand it, it is a neurological disorder, it’s progressive, when I was your age with cmt I too was laughed at with my funny walking and so weak I would fall over easily I would lose balance because I didn’t know any better how to manage or to know ways to avoid the falls, I used to hold onto someone and I would hang onto walls rails etc, I avoided so much so that people friends wouldn’t notice my cmt and laugh at me, please don’t let them get to you, please try and be strong, Stronger than the disease. I also live in London, if you need someone to talk to I’m here.

Hi I love London. Can you please write me on my email

Isakumarjo@gmail.con

Thx

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