School Day with Muscular Dystrophy

School Day with Muscular Dystrophy

September 11, 2017 MiKayla

I am a new student to Riverton. Have you ever noticed anything different about me? You might have seen me in the hall or in class wearing leg braces and/or in my wheelchair. I have a Muscular Dystrophy disease called Charcot-Marie-Tooth (CMT).

I was officially diagnosed with CMT when I was six years old. I inherited CMT from my mom, who inherited it from my grandpa. Some of the difficulties we have with CMT are trouble with balance and weakness. CMT is a progressive disorder that slowly damages the nerve cells leading to a person’s extremities. There is no way to predict how far or fast the disease will progress, everyone who has CMT is affected differently.

CMT is the most commonly inherited peripheral neuropathy disease, estimated to affect 1 in every 2,500 people. Peripheral neuropathy means weakness, numbness, and pain from nerve damage, usually in the hands and feet. It was found in 1886 by 3 doctors whose names were Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.

There are no cures for CMT but things that help are exercise, physical therapy, occupational therapy, leg braces, and sometimes corrective foot surgeries. I’ve tried several types of treatments. Since I don’t have any reflexes, my balance is not good and I can fall really easy. If I am unbalanced at all, like with my backpack or on uneven ground, I can easily fall. I have a lot of bruises from my falls, I mainly fall when someone accidentally bumps into me. I have done physical therapy for most of my life. Right now I’m doing weekly therapy in the pool and on land along with exercises at home. I’ve had several different types of leg braces, some short AFO’s and tall ones that go to my knees. My leg braces keep my foot at a 90 degree angle so my foot doesn’t drop and drag my toes, which can cause me to fall. I have to stretch my muscles in my legs everyday. I have tried different medications too but none have been helpful. Mostly I have to keep my muscles moving in order to keep them working.

I have learned that even though my muscles don’t work as good as other kids my age, I can do just about anything I want to do. #overcomer, #CMT #beautifulinsideandout

This is a picture of my leg braces. This mainly happens to most people who have CMT.