Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Hi, CMT was explained to me like this. CMT is inherited like deafness you can be so slightly hard of hearing that you never notice yet have a child completely deaf. I am glad your seeing a genetic counselor they have been helpful to many other couples. There is a procedure that you can have done to prevent the CMT 1A gene before you have a pregnancy. I am not sure what it is called. Gretchen will have the name of the test. I am not a good one to ask how to deal with passing in a genetic condition because I really hate it most days. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Well I have CMT, my name is Sue. My husband and I were scared also. When we decided back in 1990 to have children we had a test done to tell what our chances were. Now today we have a 15 year old son who does not have CMT and a 13 yr old daughter who does. I have CMT1 type and so does she. The doctors and us are working together to try and help our daughter strenghten her legs. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Hi there. I have Type 1A passed down from my mother, passed to her from her father. I have passed it down to my daughter (1st child) and my son (3rd child). With each new generation that has inherited it, it has been worse but you must realise that it will be different for different families. As for having children, I found out in my 20's that some idiot doctor told my mother to get my in to some genetic counselling so they could brainwash me so I wouldn't have children and pass it on. She chose not to do this and I am glad. Yes two of my children have CMT but I survived my childhood and so will they. Megs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 I am certainly not a genetic expert, but I can speak to you from my heart. My illness was diagnosed 10 years ago not until age 37, although looking back at my childhood some things make sense to me now. I have three beautiful grown children 28, 24, and 19. None have experienced any symptoms and all 3 were athletes in high school. I would have never decided not to have children. If the illness presents itself to them later on, they'll deal with it with courage and grace. I know this because that's how they deal with me and my illness. They take my hand when I walk if I'm not using my walker or wheelchair. They do things for me without being asked. They love me for who I am and they have a lot of faith. They learned this from their father, my husband. There are no guarantees in life, and personally, I think that dealing with challenges makes one a stronger person. You'll love your child(ren) no matter what, even with their imperfections, just as you love your husband. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 Well, as for myself, the family thought I had a mild case, very mild. My twin had surgery when she was 16 and 17, otherwise she would have been in a wheel chair by the time she hit 21. We are both 57. She's doing better than me. I had such a mild case they wondered if I really had it. But at 49 I got slammed with it. Our younger sister is 52 and has a very, very mild case. Her children do not seem to have it. But my twin , her daughter was diagnosed when she was 5. Was in braces for about 4 years and is now 18. Not having much of a problem at all. My daughter shows no sign of CMT and she's 28. So as far as having children, we all say we would never of thought of not having children. Just think of all those smiles, tears, anger outbursts and laughs and all that love you would have missed. I never once regretted having children nor has my two sisters. I really believe that everyone should have at least one. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi, My husband has CMT although you wouldn't really know apart from the shape of his feet! His father has it and is quite severe with it now and unfortunately my daughter has it. She is 11 and very fit and healthy but it is more severe than my husband's. She had a bad bout of pain last year but apart from that and not being very good at PE, running and high impact sports, she is fine. She swims regularly which I have been advised is extremely beneficial for her leg muscles. She has regular physio appointments and hospital check ups. No one knows how severe her symptoms will become but I would strongly advise that this should not stop you from having a baby. My other daughter is free from CMT thank god. Even now, I would never be put off from having another baby because of this. Our daughter was diagnosed when she was seven but I knew she had a problem since she was eight months old as she could not bear her weight. Please don't be put off of having a baby. Regards Quote Link to comment Share on other sites More sharing options...
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