Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Hello Kelley! Welcome to this list which has given me so much encouragement, information and a feeling of " belonging " (I´m no longer the only one in the word with this strange disease) although I live in Sweden, Europe. I have two boys; Pierre who is 12 and Patric who is 8. We have all CMT1A (as far as I know). When we got our diagnose in 1993 I thought about our CMT as a rather slight disease. Well, I don´t think it´s so slight anymore, at least not for us. We can still do very many things but in our own way and speed. About neck-problems; I have that quite severe but I havn´t heard my children complain over that. But I think it´s only a matter of time until Pierre gets these problems. He has problems with holding up his body for a whole day and is more and more leaning a little forwards and hanging with his head when he walks. I can already see a little knob (?) on his neck. Therefore he has got very good " healthy " chairs both in school and at home which are tipping down a little in order to force him to sit with his back so straight as possible. Have a good time , Rose Quote Link to comment Share on other sites More sharing options...
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