Carrie's Words

The day I was diagnosed does not stand out in my memory as being especially traumatic. Probably because I didn’t believe what the doctors were saying. I was a healthy teenager with dreams and aspirations, not a sufferer of a neurological genetic disease, facing life in a wheelchair with progressing physical disabilities.

I remember a day, later in the year in the lunchroom at school. All the girls were sitting in circles on the floor, where you would maneuver a path around each group in order to reach your own friendship circle. This should have been no big deal, I had been doing this every day for three years. But on this particular day I started to lose my balance. My steps were so wobbly and I had to lean on the girls’ heads in order to steady myself. Of course everyone thought that I was joking around and laughed hysterically as I pretended to fall on top of my friends.

But on the inside, my world had ended. 'Oh my god, this is real, what am I going to do?’ I sat there in the lunchroom that day, petrified. My life was now completely out of control, this disease was really inside my body. It was an unimaginable feeling of fear, a feeling that has been with me everyday since.

That day in the lunchroom was 11 years ago now, during which time FA has left many devastating effects on my body. I cruise around in my wheelchair still disbelieving that this is happening to me, I guess everyone with a debilitating disease says that.

But the unusual thing about FA is that there is no treatment at all. We cant even slow the progression down even though scientists have recently located the faulty gene and identified the problem. The ironical thing about this disease is that there is currently enough knowledge to find a cure but because it is so rare, there is simply not enough funding and awareness to research possible remedies.

Frustrating--yes, but I consider myself fortunate to be in the position that at least I know that a real cure is only a matter of time. There are FA sufferers of all ages, I am 26 and believe that there is a long healthy life ahead for all of us living with such cruel illnesses that intrude on our young lives.