I’m a young 23 year old woman suffering from Friedreich’s ataxia (FA). I learned that I had this illness when I was nine, but I learned to live with it without feeling too sorry for myself and continuing to live like most teenagers. At first I didn’t really understand what it was… I was taking it a bit as a game that let me skip school for hospital visits, but later it has helped me a lot to always see my condition in a positive light.
Like all ataxic people I suffer from my heart although less than others. In fact, it was my heart that confirmed the FA diagnostic. For a few years now the doctors have been telling me that idebenone has been really good for my heart because today the doctors would have a hard time establishing a FA diagnostic by only looking at my heart!
Between the ages of 10 and 13 I was walking with an aid. Between the ages of 13 and 15 I was still able to walk but I was getting tired fast so I spent half the time in a wheelchair. At that time I was in high school and my school wasn’t adapted (stairs everywhere). However together with the administration we found a solution by buying a device that allowed me to go up the stairs in my wheelchair and by condensing my classes in one area of the school! Since I’m 16 I always go around in a wheelchair.
However I don’t lose heart because of my illness! Obviously there are things that I’m not able to do at all, but everything is possible in life… And if you want it you can! Two concrete examples are the trips that I was able to make and my studies. I have travelled to Disneyland, New York, the Dominican Republic and Mexico and I fulfilled my dream of visiting Hollywood in California! As for my studies I completed elementary and high school at the same private school, I finished my CEGEP in three years, I spent a year in university and I got my third diploma after a year in a show business school.
Yes, I am girl who goes around in a wheelchair and who is suffering from an illness, but I’m not all that… First and foremost I’m a young woman!
Source: L’Eldorado. June 2009. p.7
Translated by Sofia Arenzon