For much of the summer, I dared to dream the impossible dream of a life unburdened by Friedreich's ataxia. Last week, the unbeatable foe kicked my ass.
The drug study I was involved in four or five years ago sought to determine if one could replace the protein that the cells of Friedreich's ataxia patients don’t make. I was going to say can’t but who knows, maybe they can and are just being jerks.
Anyway, this is a drug that I have long waited for. I'm certain that it is more complicated but to me it just makes sense, like a diabetic taking insulin. Early on when discussing this drug, my neurologist said something along the lines of this is not a treatment it's a cure.
So yeah, I wanted to be involved.
And in June I was invited to take part in a long-term study of this drug.
This is what you've been waiting for! a friend excitedly texted me. I was more excited.
The study folks were very clear that there were known no benefits and there were risks. But because there were no known benefits, I was free to imagine my own: maybe my hearing would improve, or maybe my eyesight, maybe I could stand without a wheelchair to help, maybe I wouldn't be glad when the injection fraction of my heart is low normal, maybe I wouldn’t cough as much …
But after talking to my neurologist at the screening and then to Mom and my sister, I determined that this study at this time was not for me.
I know that I made the right decision. That knowledge does not at all keep keep me from being crushed.
I try to avoid hoping or dreaming, especially when it come to Friedreich's ataxia. That way I avoid being disappointed. Like now.
The unreachable star remains out of reach.
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