My Story

I was eight years old and half-way through the third grade; it had been a good year so far and it was my first year not being home schooled. My teachers loved me and I adored them as well. I enjoyed learning and was well-behaved and perhaps a bit shy, but I got along with my peers just fine and no one had reason to complain about me. I had never been very athletic but this was never a problem at school. I was a happy-go-lucky little girl.

Then half-way through that year my life quickly changed. Within the next three months I got five ear infections and three throat infections. I went on antibiotics and was soon plagued with horrible stomach pains that would leave me crying and screaming on the floor. They weren’t leaving, and no one seemed to know what was happening to me. Migraines were also added into my pains. I was missing school and seeing all kinds of doctors. They gave me all sorts of tests and looked into a wide range of things but nothing told us what it was. Two of the less “enjoyable” tests were a scope and upper GI. Some of the doctors took the “She’s lying” route. They’d ask me all sorts of questions like “Were you happy in school?”. I was, until this happened to me. Some suggested taking me to a psychologist. Needless to say, I’m not big on doctors these days, even though I want to be one.

My teachers, on the other hand, were very supportive, for they’d seen how well I was doing prior to this. Unfortunately, I didn’t have the same teacher experience in the fourth grade. By then I’d learned to wear my classic fake smile and suffer in silence--voicing my pains got me nowhere. So my teachers were completely unaware and acted like my mother was just extremely overprotective.

Fast forward to eighth grade. Over the last few years I’d switched schools due to bad teacher experiences and health problems, and eventually settled on home schooling. The stomach and head pains had settled down for the most part (finally!), not due to any help from doctors. I was “just” dealing with fatigue. One day I was at my best friend’s house when I felt a pain in my shoulder. I figured I’d pulled something, and tried to ignore it. Little did I know this was my welcome to CMT. My shoulder pain persisted, developing into shooting pains down my whole arm (neuropathy pain). Soon I was also getting cramps and muscle spasms in my hands/arms/legs. We ended up seeing several neurologists and I was more formally diagnosed with CMT1A. (My family had suspected since I was little.)

I’m now a sophomore in high school. My CMT has progressed a lot, and I’ve gone through numerous different pains and problems from it, which, as you can see, I’ve started to blog about! I’ve been lucky to have supportive teachers, peers, and family. I plan to go into neurology and I hope to be able to help other people with CMT someday.