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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I have returned! (Official back from vacation post)

Hello! As some of you know, I did come back from my trip but promised to make an official post with pictures so here you are. On August 4th, I took a flight from Florida to the UK to go and visit a friend! This friend paid for my trip so how could I say no? Especially since my fiancee hopped on a plane to join us as well! (I wont post pictures of my friend because I do not have her permission. Also there wasn't a ton of site seeing where we were so mostly it's just me and my girl. G.G ) So…

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3 Replies · Reply by Michaela 4 hours ago
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PICC Line Arm from Care + Wear

My good friend Chait Razdan started a company that makes arm bands that go over PICC Lines. You can customize the arm bands for a charity you want to support (hello Ben's Friends) or for a message you want to spread. It's a cool new medical product so I wanted to share it here.  You can pre-buy it through Indiegogo here (https://www.indiegogo.com/projects/the-band-improving-life-for-picc...). There is no financial relationship although we may do a print for Ben's Friends if people like the…

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Ben's Friends Member Survey

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.

Mobile App and E-Book Available for Download

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Activity

Michaela left a comment for Cheryl SJ
"Hello and welcome, Cheryl! Yeah the Ning options for personalizing your page are a headache to figu…"
4 hours ago
Michaela replied to Michaela's discussion I have returned! (Official back from vacation post)
"Thank you! It was good and I'm glad I got to experience it, especially glad that I managed pretty w…"
4 hours ago
dancermom replied to Michaela's discussion I have returned! (Official back from vacation post)
"Looks like an amazing trip, Michaela, horrible cab drivers notwithstanding. Great pictures!"
5 hours ago
Michaela’s discussion was featured
Hello! As some of you know, I did come back from my trip but promised to make an official post with…
5 hours ago
dancermom liked Michaela's discussion I have returned! (Official back from vacation post)
5 hours ago
dancermom left a comment for Cheryl SJ
"Welcome Cheryl, I'm glad you found the EDS group. Feel free to start a discussion to tell us more a…"
16 hours ago
scott o left a comment for Cheryl SJ
"Huge welcome Cheryl!"
17 hours ago
Cheryl SJ left a comment for Cheryl SJ
"Just found the rotate option on here for photos."
17 hours ago
Cheryl SJ left a comment for Cheryl SJ
"Why would I comment on my own comment wall?"
17 hours ago
Cheryl SJ left a comment for Cheryl SJ
"Lol. Even trying to post a photo I had to contort myself. Different photos were showing up sideways…"
17 hours ago
Cheryl SJ updated their profile photo
18 hours ago
Cheryl SJ updated their profile photo
18 hours ago
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