Quote:
Originally Posted by Tashi
I think the reason why there is no recognition, is that they keep changing the name. In 1984 it was decided to be RSD. That was getting some attention until it became CRPS.
Before it was RSD it was Sudasacs Atrophy. I can't remember how it was spelled, but is irrelevant now anyways.
Fibro had 1 name even when they didn't know what it was.
This disease/syndrome calls progress by changing the name.
The RSDSA assoc was started by 2 families with children that were diagnosed with RSd. We had real surveys then to try to find a common link. Now it is corporate with doctors from Medtronics on the board.
They are not interested in a cure, only in making $$$
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Sometimes it really sound like it. All the treatments I have been researching are very expensive and they just treat not cure and nor have definitively found the cause of it. But just look at diabetes no cure either. So I think that proved your point.