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#1
May 04, 2009, 10:01 AM
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I know many many ppl have never heard of Ehlers-Danlos Syndrome. It's a connective tissue disorder that is genetic. There is no cure and no set treatment, but supportive care. It's hard to ever find a doctor that's heard of the disorder. I put some videos in the video forum of some faces of EDS. Yeah, we look normal, like there isn't anything wrong, but we are in pain.
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Back, I've lost months, months ! |
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#2
May 07, 2009, 11:17 PM
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ThaCrew is so sorry Monty_girl is in so much pain
 (((((((((((((((((((((((Monty_girl)))))))))))))))))))))))))))) know that I care alot about you. I am so sorry you hurt.  Be good to yourself ThaCrew Peace
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later |
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#3
Jun 06, 2009, 08:04 AM
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I also have Elhers Danlos Syndrome ~ benign hypermobility syndrome, fibromyalgia and chronic fatigue syndrome too. It took 8 years to diagnose and is getting gradually worse. Yeah i know the 'we look normal' thing and the 'whats that then ~ i never heard of it'. I had to lose my husband because he couldnt cope with my physical and mental state and fight to get my disability allowance but apart from the pain and loss of proper independance oh and the head problems ~ i am ok
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**Shadowsilence** All that we see or seem is but a dream within a dream....change is eternal, perpetual and immortal. |
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