What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.

Ehlers-Danlos Syndrome is caused by a defect in the synthesis of collagen, specifically mutations in the COL5A and COL3A genes. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. 

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Autonomic Testing

Has anyone been for any autonomic testing or seen an autonomic specialist? I know that there are an extremely low number of these clinics in the U.S and I am very lucky to be getting tested.  I am even luckier to be getting tested by the man who set up 5 of these clinics.  I am just wondering if anyone has had any success with this testing and if so, has it made a big difference in your treatment?

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4 Replies · Reply by Kristin Conley on Friday
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Yoga helping with EDS pain

http://www.chronicpainpartners.com/yoga-helped-christine-cope-ehlers-danlos-pain/ How Yoga Helps Christine Cope with Ehlers-Danlos Pain Nov 26, 2014 Christine has found a method to cope with her Ehlers Danlos Syndrome that works well for her. Practicing gentle yoga has changed the way she thinks and feels about her pain and helps her get back more control over her life.   By Locke Hughes. For one woman struggling with a deadly genetic disease, a daily practice provides so much more than stress…

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5 Replies · Reply by Kristin Conley on Wednesday

2nd guessing myself was just diagnosed

Hi all. My name is Ashley and I am 24 years old. I have had three kiddos and with all of them I have had stuff happen. With my first kiddo there was a point in my pregnancy where it hurt to walk. With my 3rd everything was so loose I would hear a pop every time I got out of bed. My daughter is 8 months old now and I have been having problems just carrying her to her room because my legs felt so week and painful. I finally went in and he diagnosed me with Ehlers danlos syndrome. I don't have…

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5 Replies · Reply by Samantha B on Tuesday
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Little Boy's Wish Comes True

http://www.cbsnews.com/news/giving-and-giving-back-via-make-a-wish/' The link above is to an article about a little boy who has EDS.  His story is so touching though because Make-A-Wish made his wish come true.  You absolutely have to read the article.  It had me in tears, not only because of his wish coming true, but how they went above and beyond for him.  They also brought forth so much truth to our condition and shed light on the debilitating reality we are facing, not only as adults, but…

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1 Reply · Reply by Michaela Dec 8

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scott o left a comment for lisa roman
"Wonderful to have you here Lisa!
One tip, if you have specific questions it's best to start a New D…"
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lisa roman is now a member of Ehlers-Danlos Syndrome Online Support Group
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Kristin Conley replied to Kristin Conley's discussion Autonomic Testing
"Norfolk and I cannot find the paper with his name at the moment."
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Kristin Conley left a comment for Kristin Conley
"My daughters' genetic testing came back positive for  the gene I have.  So now, we are the only 2 p…"
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Kristin Conley updated their profile
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Lauree Ovshak replied to Kristin Conley's discussion Autonomic Testing
"Where are you going to get tested and what is the Dr.'s name?"
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Kristin Conley replied to Kristin Conley's discussion Autonomic Testing
"I am going to see if I can get someone to go with me and try to get pictures of what they do. It w…"
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Shannan Stewart liked Kristin Conley's discussion Autonomic Testing
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Michaela replied to Kristin Conley's discussion Autonomic Testing
"You will definitely have to share what happens with all that. I've never been tested at a place lik…"
Wednesday
Kristin Conley replied to dancermom's discussion Yoga helping with EDS pain
"That is a really neat article. I agree with Miachaela; everyone should be open to trying different…"
Wednesday
Kristin Conley posted a discussion
Has anyone been for any autonomic testing or seen an autonomic specialist?
I know that there are an…
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