Silent, Slow,Pain Death. DYSTONIA! WE DEMAND A CURE! WE DEMAND BETTER CARE! WE MATTER TOO!
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I Have Dystonia. There's little to no information about this illness. There's little to no cure, barely any relief. We suffer in excruciating pain 24/7 365 days. We are bed ridden, wheel chairs, walkers, as early as Infant age. We have "storms" so bad we end up in the hospital, they keep us sedated just to try for these storms to stop. Oh when we go to the "Specialists " Dr's" 99% of them have never heard of this, therefore we become Guinea pigs for treatment and medication, and Brain Surgery that they try to sell us as a cure, come to find out it's not. We live in the most powerful Country in the WORLD and we can't even at least educate "The health care Profesionals " about us? We also need a Dystonia Awareness Month. Could be in May since the 1st Dr. to make a break on Dystonia works there. Dystonia-foundation.org click on the right top bars to learn more.
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