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. 


Who wants to see their work published in a book about EDS?!

Sama Bellomo, the organizer of Loosely Speaking: An Anthology of Life With Ehlers-Danlos Syndrome, is looking to make a volume 2! (click for preview of Volume 1) She is in need of writers and artists of all types who would like to see their work that expresses what it's like living with this condition. Here is your chance to get some of your stunning works published! We have some fantastic and expressive artists in this group. Don't hesitate! The book can't happen without you! With the first…

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Sorry for being inactive

A huge welcome to all of the new members who have joined in the past month. Please do post discussions or reply here. We would love to hear from you! I'm sorry that I've been pretty inactive the past month. I saw a surgeon in the hopes that he could help me with my severe chronic bursitis but he's not very confident. Worried that the risks outweigh the potential benefits. I'm going for an MRI tomorrow before I head back to Tampa to see the surgeon again. I hope that that MRI shows something…

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3 Replies · Reply by Michaela Feb 25

Family and EDS

Does anyone else struggle with their family and their lack of support throughout your journey?   For myself, my mother makes it seem like I am a hypochondriac.  Like I have gone to the doctors and convinced them of all of the things that are wrong with me.  The funny things is, I have only complained of simple things, like a common cold or something like that.  Everything else, I have been told I have.  Plus, how do you make up aneurysms and AVM's?  Also, you don't get referred out to major…

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5 Replies · Reply by Jay Jones Feb 6

Head pain?

Hi everybody,Just looking for opinions. I have EDS-Hypermobility. In the past couple weeks I have had off and on pain on the top of my head. Almost like someone is pounding a hammer on my head. No neurological symptoms.I am a bit spooked.Any thoughts????

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2 Replies · Reply by Nel Jan 30

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Michaela posted a discussion
Sama Bellomo, the organizer of Loosely Speaking: An Anthology of Life With Ehlers-Danlos Syndrome,…
Feb 25
Michaela replied to Michaela's discussion Sorry for being inactive
"No new good news, I'm afraid. Sorry I never updated. The surgeon isn't able to help me. I gt inject…"
Feb 25
dancermom left a comment for Tina Amadio
"Welcome, Tina, to this supportive community. Feel free to post a discussion to introduce yourself o…"
Feb 21
Tina Amadio and Laura Smith joined Ehlers-Danlos Syndrome Online Support Group
Feb 21
dancermom left a comment for Laura Smith
"Welcome, Laura, to this supportive community. Feel free to open a discussion to introduce yourself…"
Feb 21
dancermom left a comment for robert adams
"Welcome, Robert, to this supportive community. Feel free to open a discussion to introduce yourself…"
Feb 18
robert adams is now a member of Ehlers-Danlos Syndrome Online Support Group
Feb 18
Michaela left a comment for my merlot
"Welcome, My Merlot. I hope that you find the support you need here. Please don't hesitate to start…"
Feb 16
my merlot is now a member of Ehlers-Danlos Syndrome Online Support Group
Feb 16
Kristin Conley shared their photo on Facebook
Feb 14
Michaela posted a photo
A silly valentine. =)
Feb 14
  • Michaela Aww. I'm glad you like it, Nel!
    Feb 16
  • Nel Brilliant. A home made Valentine's got to be the best.
    Feb 14
Michaela replied to Michaela's discussion Sorry for being inactive
"Thanks. The surgeon actually called and rescheduled for this Monday after he got my MRI report. I h…"
Feb 14



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