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. 


Ring Spints

If you have hypermobility of the finger joints there is little to prevent them from continuing to loosen regardless of what precautions you take because of lack of muscular support in those areas. So the more you use your hands whether for work or hobbies, the weaker they get and the looser the joints go and the greater your pain and risk of injury. This causes a lot of problem that interfere with daily lives. Unlike ankles and wrists, you can't just bind them to lesson pain and instability.…

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5 Replies · Reply by Heather Arthur 4 hours ago

If You Could be Heard....

I am meeting with our local congressman's office on Monday in regards to my foundation and gaining support of public figures and I want to make sure that I am armed with knowledge and understanding of our struggles.  I know all of the medical  things I need to know about why I am doing this and my own experience, but what about all of you?  If you could be heard and have a chance to say one thing to make a difference, what would it be?  What would you change about how rare diseases and related…

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8 Replies · Reply by Kristin Conley Jul 25

Passing it on...

A friend and ICU nurse gave me her solution for back pain. It's from her home country of Australia, and sounds like it would be worth a try! http://elmoreoil.com.au/articles/new-extreme-sports-pain-relief-launched-in-the-usa/

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Heather Arthur left a comment for Heather Arthur
"Ahhhh my husband got approved for his disability finally!!!! :D"
4 hours ago
Heather Arthur replied to Michaela's discussion Ring Spints
"My husband uses the silver swan neck splint on all his fingers and they help tremendously. Hes on t…"
4 hours ago
David Kelly replied to Michaela's discussion Ring Spints
"Really interesting information, Michaela - thanks for sharing :-)"
David Kelly liked Michaela's discussion Ring Spints
SK replied to Michaela's discussion Ring Spints
"I have actually seen these worn and just thought they were alternative jewelry! Very cool, especial…"
Michaela replied to Michaela's discussion Ring Spints
"(that last image there is my hand)

I was wearing them every day but now sadly they need to be refi…"
dancermom replied to Michaela's discussion Ring Spints
"Have they helped you personally. Michaela? Can you wear them while you sleep? Do you wear them ever…"
dancermom liked Michaela's discussion Ring Spints
Michaela posted a discussion
If you have hypermobility of the finger joints there is little to prevent them from continuing to l…
Michaela liked Ben's blog post Ben's Friends Monthly Newsletter - July 2014 Issue
Ben posted a blog post
Just the Stats:

Welcome New Members and Greetings from Ben's Friend…
dancermom left a comment for Lauren Silinsky
"Lauren, you have the coolest cover photo! Welcome to the group."


June 2014 Community Newsletter

Summer - the time of the year where some of our wonderful and fun memories are made. As a quote goes, "Life without love is like a year without summer."  Spend some time with your loved ones, enjoy the sights and sounds of nature and feel the…
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