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This 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.
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August 2007
- Since I was 12…. - by Shannon - (Thu, Aug 23 2007)
I first noticed that my legs were hurting when I was about 7 or 8. Around this time I was really interested in getting into gymnastics. During my 7th grade year, I made the gymnastics team at my school. This is when I found out that my legs were really different and that I had a really hard time running and jumping.
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- Let’s try and help each other! - by Jennifer - (Fri, Aug 03 2007)
My name is Jennifer. I’m 28. My Gma, Mom, Uncle, and cousins age 10 and 13 all have cmt My 10 yr old cousins ankles are turned in and her feet slap the ground like my mom’s. It’s so bad she can’t keep up with other kids or walk an amusement park. We must all be studied on an individual basis
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- ref marilyn jul 14th 2007 - by mark r - (Fri, Aug 03 2007)
my name is mark and im 41 years of age. i have just discovered that theres info on net relating to c.m.t. After reading the views of studys held on the subject i was amazed at the lack of insight, that is until i read your story marilyn. i suffer from all u mentioned and (am now feeling much pain in shoulders and neck as well as feet, hands, knees, hips and back.)
my feet had started to club from a young age , tho my mum and dad didnt treat my pain as a young child.
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- Life with CMT - by Amber - (Thu, Aug 02 2007)
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.
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