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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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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Aneurysms and Vascular Malformations

I know that sometimes with Ehler-Danlos, some of us suffer from vascular complications.  I also am aware that they tend to be vascular complications that often times are not run of the mill occurrences or things we would typically see.  Thus leaving us with fewer outlets for support or place to go to share our stories, information or gain positive support where do not feel like the odd ones out.  Granted this feeling may not be true to all, but I know I personally have experienced it having had…

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3 Replies · Reply by SK on Friday

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Moderator scott o posted a discussion
Sean Vikta & Blue Redefined Patient Organization Sponsors Ben's Friends
Thrilled to announce that Ben's Friends received a $1,500 donation from Sean Vitka and Blue… See More
13 hours ago
Moderator Michaela replied to David Kelly's discussion What is the worst thing about being sick?
"So far there is no real treatment for hypermobility. :/ There are treatments for the symptoms and…"
yesterday
Moderator Michaela replied to Michaela's discussion Advice for traveling with EDS?
"Hahaha. And here I landed a short Swede named Madde who speaks perfect English. One out of three?…"
yesterday
Moderator David Kelly replied to David Kelly's discussion What is the worst thing about being sick?
"That is god to hear, SK. In a way,it's a pity that it takes celebrities for this to happen and…"
Sunday
Moderator SK posted a discussion
Passing it on...
A friend and ICU nurse gave me her solution for back pain. It's from her home country of Australia,… See More
Sunday
Moderator SK replied to Michaela's discussion Advice for traveling with EDS?
"I like bags within bags, all things that could spill out are in at least one ziplock bag, and I…"
Sunday
Moderator SK replied to Michaela's discussion Advice for traveling with EDS?
"I have to tell you that before I met my husband, I had a standing joke going at work that I wanted…"
Sunday
Moderator SK replied to Michaela's discussion Advice for traveling with EDS?
"Airline tickets, passport, and meds in pharmacy bottles are the main things to remember! We ALWAYS…"
Sunday
Moderator SK replied to David Kelly's discussion What is the worst thing about being sick?
"Are biologic medicines being used for hypermobility autoimmune diseases?"
Sunday
Moderator SK replied to David Kelly's discussion What is the worst thing about being sick?
"My primary disease is Psoriatic Arthritis, my Rheumatologist told me that 'the golfer'…"
Sunday
Moderator Michaela replied to Michaela's discussion Advice for traveling with EDS?
"I will! Thank you for your concern. I'll definitely keep you posted on everything. It's…"
Sunday
Moderator David Kelly replied to David Kelly's discussion What is the worst thing about being sick?
"Good points, Michaela - knowing our luck, we'd have a disease that is solved next century !!!"
Saturday

Blog

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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May 2014 Community Newsletter

Rejoice and celebrate the season of Spring. Enjoy the colors and  the beauty of nature. Reach out to your friends and loved ones and share the warmth, the colors and happiness of Spring. Greetings from Ben’s Friends!

Welcome…

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Welcome!

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If your family has been affected by EDS, consider Ehlers-Danlos Syndrome Support Network your second home.

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