This is amazing news. I've been having to comb websites and medical journals and books that are written for medical professionals - we all have to try to find and understand them, as this is the only way to get information on our condition and any possible treatment. We have to educate our own doctors. My rheumatologist is a wonderful man, but he has an office full of people with arthritis and I am only the 3rd EDS patient in the history of the office. This means he has to focus on staying on top of research that affects the vast majority of his patients and he relies on me to bring him research that I find on how to treat my condition. I'm one of the very lucky ones - many people have doctors who won't listen to them, say they don't have EDS, that it's all in their heads, or - get this - REFUSE TO DIAGNOSE THEM BECAUSE THERE ARE NO TREATMENTS FOR THE SYNDROME! Now, what kind of crap is that???
So this is amazing news. Even if I never go there for treatment (once it's officially open, which will take a while), I'll have a kind of central clearing house for information on the damned thing. It'll eventually save me a lot of Googling and may help cut down on the amount of experimentation I have to do with treatment options.
This comes the morning after another sleepless night. I love going to Pilates, because my friend/teacher is amazing and I feel like I'm improving my condition, but I often suffer for it for the next 24 hours (sometimes I'm FINE and I'm a very happy camper!) No pain last night, but a seized muscle in my hip kept me from sleeping and all night I was combining stretching/heating pad/massage stick til I collapsed from exhaustion as the morning sun was coming up. So knowing there are medical professionals in a centralized location who are going to be focused specifically on EDS has been great news to wake up to.
So this is amazing news. Even if I never go there for treatment (once it's officially open, which will take a while), I'll have a kind of central clearing house for information on the damned thing. It'll eventually save me a lot of Googling and may help cut down on the amount of experimentation I have to do with treatment options.
This comes the morning after another sleepless night. I love going to Pilates, because my friend/teacher is amazing and I feel like I'm improving my condition, but I often suffer for it for the next 24 hours (sometimes I'm FINE and I'm a very happy camper!) No pain last night, but a seized muscle in my hip kept me from sleeping and all night I was combining stretching/heating pad/massage stick til I collapsed from exhaustion as the morning sun was coming up. So knowing there are medical professionals in a centralized location who are going to be focused specifically on EDS has been great news to wake up to.
RSS Feed