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My story with Friedreich’s Ataxia (1 of 4 )

The story I am going to tell you today is mine and how Friedreich’s ataxia came into my life. First, what is Friedreich’s ataxia? It is an incurable degenerative disease caused by genetics that affects the neuromuscular system and coordination.

It all started when I was about 10 years old. I did (a lot) dance at the time (my life = dance, eat, sleep, repeat… like 8 days a week!). The director of my dance school (Ballet LeDuc for the people of the Outaouais) told me one day that she found that, for some of my movements, I was not “grounded” … it seemed like I was floating. For example, doing the jumps, it was as if I was in the air too long and when I landed on my feet, I fell behind the music. But hey, I left alone, telling myself that was my charm.

The following year, I went to Cuba with my mother, a friend of mine and her mother. My friend and I had fun walking on the edge of the pool, balancing without falling in it (yes yes, it was a game … even one of our favorites!). My friend thought it was almost too easy, whereas I, let us face it, I looked like a drunk girl who failed a blood alcohol test … except that I was 11 years old, my alcohol consumption was therefore at 0%. That too I left alone, telling myself that not everyone is made the same.

It was when I entered High School that the problems started. At my school, the first few months of the school year were spent cross country running. My god that I hated that! And with good reason, because in October, I fell among tree roots in the forest!

I had a bandage on my ankle for weeks, but nothing changed. So, I went to see a chiropractor to crack that bone in me so that everything would go back to how it was before. It worked! Except that it continued to hurt me for months and I was still walking and limping when it should not have. Almost 3 months later, in November, my family doctor sent me for tests at the Eastern Ontario Hospital (CHEO) because something was clearly wrong with me!

You will be able to read more in my next articles because this story is far from over! It’s just the beginning! See you soon.


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