Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Welcome June, Our 14 yr old son was diagnosed 3 yrs ago. Unfortunately it is now showing sign in his hands. He has just started wear AFOs which really help him walk. You would never know that he struggles to walk without them, gets tired quickly and his feet hurt. But, at 14, it's a struggle to get him to wear them everyday especially in summer (he won't wear them with shorts). It is very difficult for people to understand CMT when most people have never heard of it. This is a great support group who will help answer any type of question/conern you may have. My one thought on your last line was that your children are having their children tested. On a personal note, my doctor highly recommended that myself and our younger son NOT be tested, for the simply reason that you may only be a carrier or even show no signs of CMT (it varies even in the same family) but if the test shows positive, you're insurance brands you and you may find that will hurt. Since neither myself or our younger son show any signs we have chosen not to be tested. We have enough issue with our insurance company not wanting to cover things related to CMT because there is " not a cure " as they put it. Good luck and welcome. Quote Link to comment Share on other sites More sharing options...
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