Have you ever heard this word? If you answered "yes" I am guessing you have any kind of ataxia or know anyone who has it. How did I guess? Well, people usually don't know anything about this rare neurological disorder that affects, mainly, balance and coordination. There are many kinds of ataxia (acctually this word means a sympthom). I have the most common of them, a recessive type, called Friedreich's Ataxia (FA).

Let me tell ya a brief story about my life with ataxia so far. When I was a little child, I used to go shopping with mom and my sisters, but I got tired very easily after walking a little. The same happened when I played with other kids. I was a weak child, but my parents didn't think there was really something wrong about me. When I was 9, someone noticed I had a curve on my back. At 11 I started to wear back braces for my scoliosis. I had to wear it for about 4 years. I hated that! The only thing I liked was because that was an excuse not to go to Physical Education class. That was the time when my walking was getting weird. I was loosing my balance but didn't realize it, and I always blamed my braces. I was looking like a robot (my dad used to call me "robocop" hehe). Someday I told my orthopedist that if I closed my eyes I'd fall down and the other kids with braces at my school were not like me. So he told my dad to take me to see a neurologist. I was 16 when the doctor easily diagnosed me with FA. I'm the only one with FA in my family. Lucky uh? :-) I was not told much about my disorder at that time. My parents were afraid that I suffered knowing what could happen with me. One year later, I started to walk with the help of friends and a walker. This year (2000) I chose to use a wheelchair. Of course it was not only my choice, but maybe I could have postponed it and continued to walk like a drunk and avoiding long ways. A wheelchair is not so bad as many people may think. It was not an easy step, but now I have much more independence than when I used my walker, without mentioning that I'm not taking the risk of falling down and breaking any bone or hurting me really bad. Although, it's important not to get lazy and exercise as much as possible without exceeding. I also take some antioxidants that give me energy while there's no known cure or treatment for FA. Everything I learned about ataxia was through the internet, when I joined an international support group (INTERNAF), that made me realize I was not alone in this world, but I have a large family. Some people have already asked me where my strength comes from, knowing that I have such a serious problem. Problem? No, I'm just special! :-) Seriously, I am not sure, but my wonderful family and friends help a lot!

Kátia Gomes

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