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. 

Moderator

May is EDS Awareness Month!

That's right! It's May again! Do what you can to show your zebra pride this month. Wear your stripes if you can! black and white is in after all. =P Tell people about this condition. There is so little awareness and people suffer for it every day. The more people who know about this condition the better. Please feel free to ask me any questions you might have about how you can spread awareness! I wish you all a safe month with lots of extra spoons. Take care, Michaela

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Moderator

Hello New Members!

I've been struggling hard these past few months and I went to some dark places. I haven't be the best admin here because of that and so I apologize. I'd love to get to know all of you new members and hope to continue to have this be a safe place for people with EDS to talk and relate together. This condition can be brutal and make things very hard. It can be exhausting and terrifying and that's why we need each other.  Here is a directory to important posts you should see. Confessions: An area…

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4 Replies · Reply by Michaela on Friday

Great way to help our family and friends support us?

Most of us have already seen different versions of this, but I really liked this one because it added some much needed humour, so in case you haven't, here you go!"13 Things People With Chronic Illness Wish You Understood - MTV"I can't seem to get the link so you can just click on it, but I'll work on it. In the mean time, just type that in on line and in will come up. It's worth it! Bye for now!Bethanne

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1 Reply · Reply by Michaela Apr 11

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Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

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Activity

dancermom liked Michaela's discussion May is EDS Awareness Month!
15 hours ago
Michaela posted a discussion
That's right! It's May again! Do what you can to show your zebra pride this month. Wear your stripe…
Friday
Michaela replied to Michaela's discussion Hello New Members!
"Oh thank you, Jay! I'm sorry that it took me so long to reply. I've been very sick again. Oof. Can…"
Friday
Michaela posted a photo
Oof. I'm sorry for being so inactive. I've been so sick lately. I went to the ER two days ago and t…
Friday
  • dancermom Get better soon, Michaela! What rotten timing when you have so much planning going on. But, yes, yo…
    15 hours ago
dancermom left a comment for Julia Gimpel Garat
"Welcome, Julia, to this supportive community. Feel free to open a discussion to introduce yourself…"
Thursday
Julia Gimpel Garat is now a member of Ehlers-Danlos Syndrome Online Support Group
Thursday
Rose Test is now a member of PETS
Apr 22
Rose Test is now a member of Ehlers-Danlos Syndrome Online Support Group
Apr 22
Jessica K. Price is now a member of PETS
Apr 20
Jay Jones replied to Michaela's discussion Hello New Members!
"Hi Michaela. I don't come here often enough. I want you to stay out of dark places (wagging finger)…"
Apr 19
Michaela replied to Michaela's discussion Hello New Members!
"Oh thank you so much. Bethanne you are wonderful and I'm very glad that you found this group. It's…"
Apr 12
Michaela replied to SK's discussion Tell me something good!
"Oh that's great, Bethanne! How exciting. :O

I have another good! I am flying to Sweden in 1 month…"
Apr 12
More…

Blog

Moderator

Local Fundraiser for Ben's Friends

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends."

It was a big success as we…

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Comments: 1

Welcome!

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