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Cyrilla Baer
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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

Amazing News - new EDS Research Center

5/14/2013

1 Comment

 
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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.

1 Comment
Lexie
5/14/2013 10:46:51 am

Welcome to the herd! Us Zebras are tough as nails, loyal to a fault and really creative. That seems to describe you to a 't'. Your resume is impressive. You have done some really fun stuff. See you around the boards! God bless!

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    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT, which is a genetic connective tissue disorder (it's why I can bend my elbows backwards!) I've kept it under wraps, but I'm out of the medical closet now.

    EDS is caused by the body's inability to make collagen correctly. Collagen is in all connective tissue and connective tissue is part of every organ and vessel in your body. While your tendons and ligaments are like rubber bands, mine are more like taffy.

    For more info, please see my post "30 Things You May Not Know About My Invisible Illness", or visit EDNF.org or CEDSA.org. And tho it's a little dated (we try not to call it Joint Hypermobility Syndrome anymore), this is a description by a doctor putting it in  layman's terms.

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