The story of Peter
My story starts from the age of 38! late diagnosis of cmt1a confirmed by genetic blood test.
Clumsy kid, last to be picked for teams, lonely childhood you know, the can’t keep up get left behind…
GP never knew I had cmt or me but my toes were curled at 18 and was told nothing to be done until I couldn’t walk on them.
Now 43 and coming to terms with limitations that I could do yesterday, last month or year. 5 operations later, orthotic footwear, afo’s, cpap for sleep apnoea oh and not to forget my hearing aids too.
Every cloud has a silver lining and at my time in diagnosis was suggested to speak to Muscular Dystrophy UK and I did. No “free” support groups in the uk for a person who is effected by there cmt. Now there is, this April #cmtfriendsuk will be 5 years old and growing a army of cmt warriors. In fact we have over 1500 members, remember the saying together we stand.
In #cmtfriendsuk there is no silly stupid question as it’s probably been ask before or others thought of asking.
Short and sweet brief life recap and happy to answer your questions