Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Hi CMT is a progressive neuromuscular disease so it is totally wrong of your doctors to say this is the worst she'll ever get. But saying that the rate that CMT does progress varies immensely between individuals and it doesn't mean that there will be any noticable progression in the near or possibly distant future. The important thing is that your daughter gets the proper care and help she needs because this will make life easier for her in the future. Does she wear AFO's? And I know I keep going on about it but you really do need Paolo's book and you need your daughter's doctors to see it too. http://www.stradeservizi.it/cmt.htm In it he describes the various degenerative stages of CMT and help that is available. Although CMT itself can be very damaging so are the secondary symptoms of CMT which result because basically the patient has not had the proper support and help. Years and years ago I suppose to some degree this was acceptable because of lack of knowledge but today it totally unacceptable. We all need to learn about CMT because sadly we can't always rely on our doctors. Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller Quote Link to comment Share on other sites More sharing options...
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