Coping With Charcot-Marie-Tooth DiseaseThis section is a place to share stories about Coping With Charcot-Marie-Tooth Disease Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download Life with CMT My 7 year old son and I live with CMT everyday. I have difficulty with simple tasks that healthy people take for granted. My son is progressively worse than I was at his age. I feel terrible when I think about how much worse it will be for him when he is my age. It is difficult to find a doctor who knows anything about this disease. I don’t feel like I get any answers from any of the doctor’s we see. The local MDA clinic is a great resource for support. I am completely devastated that I have passed this disease to my son. People ask him about his “special shoes” when we are in public. I have read that “usually vital organs are not affected by this disease”. What does that mean? I cannot get a answer from my neurologist. I guess I want someone to tell me that they can do something to fix us or to prolong our abilities to walk. All that is offered is braces and pain medicine to make the quality of life better. I’m frustrated but try to stay optimistic. We could have something much worse. At least we will walk for awhile. Comments
August 2007
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