Coping With Charcot-Marie-Tooth Disease

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.

My gymnastics coach sat down with me one day and asked me about my legs and if I had ever had them looked at. I told her that I had not and that when I had brought it up to my parents, they told me that it was all in my head and they were upset with my coach at suggesting to me that I had a problem that needed to be looked at. About another year went by before I finally bugged my parents into taking me to see a foot doctor. The orthopedic Dr. took xrays and told me that I had some bone deformities in my feet and he could tell that for my age I was showing atrophy of my calf muscles. He refered me to a neurologist. I had an EMG done and my CMT was confirmed.

My neurologist said there was no cure and sent me home with a big rubber band to strengthen my legs. I tried to keep up on it but there were really no results and becoming frustrated, I quit using the bands. I did gymnastics until I was 18. I could only do bars and beam. I had no leg muscles to do floor or vault. However, I had sprain my ankles so many times and so severely that I believe I have no intact ligaments to keep my ankles stable anymore. My atrophy in my legs is moderate to severe. I am still able to walk and carry on a really normal life. I am looking into possibly having surgery to re-attach the major ligaments to restore stability and I will be having calf implant surgery to even out my legs and give them a more proportioned look. “You can’t change, so learn to live with it.”