I took a 24-page survey today on Friedreich's ataxia.
Like past surveys, it made me feel rotten to read 24 pages of potential symptoms I might have or develop (well, 23. I can't walk so was allowed to skip a page.).,
The survey just listed symptoms, a place to check if you didn't have it and then how much the symptom affected your life.
I found this woefully inadequate. All of the crap severely affects me. If it doesn't, it is because my family is beyond caring, we have workarounds, friends and co-workers are generous. It is not due to any part of this disease being tolerable.
I realize they were trying to determine what we FA'ers have the most trouble with, so they can try to fix that. But I hate it all.
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