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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DO YOU SHOP ONLINE, ESPECIALLY AT AMAZON? YOUR USUAL PURCHASES CAN HELP BEN'S FRIENDS AT NO COST TO YOU!

Amazon is running a new promotion for Amazon Smile, their program that gives money back to Non Profits. For instance, BensFriends.org (my nonprofit) received $52 from Amazon Smile our 1st month trying it so it really works! And $50 is enough to support one rare disease support community for an entire month! To sign up: Click on Amazon Smile (smile.amazon.com) Choose Bens Friends as your charity of choice (listed as in Houston, TX).  If needed - go to My Account / scroll to Settings / find…

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pulsatile tinnitus in EYE and question about cerebral angiogram

Hello friends.  I am new here.  I have EDS 1 Classical.  I have pulsatile tinnitus in my EYE - dr. says it is a small fistula behind the eye.  They tell me angiograms are very dangerous for those with EDS - apparently that is the only way to find it. A few questions: 1.   does anyone have pulsatile tinnitus in the eye - I feel my heartbeat in my eye and it is a pulsing sensation. I have had this now for three years. 2.  has anyone had an angiogram?  what was your experience?   Thanks so much to…

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7 Replies · Reply by David Kelly yesterday
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Ulnar Nerve Transposition

So, the cartilage in my right elbow has disappeared and the nerve has been rolling out of position repeatedly.  I have lost a lot of function and natural ability to use my full range of motion due to pain in my right arm.  I drop things a lot as well.  I was told today that I am going to need surgery to fix the problem.  I am just wondering if anyone else has had this problem?  My Rehab doctor told me this is part of the Ehler-Danlos Syndrome.   On a side note, has anyone had it where they…

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11 Replies · Reply by David Kelly Aug 22

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Activity

David Kelly replied to Trish Williams's discussion Help with Abdominal /Pelvic pain
"Hi Trish.
Best wishes, and please share what you learn.
Have you made a post asking for people to r…"
yesterday
David Kelly replied to Elaine Henzler's discussion pulsatile tinnitus in EYE and question about cerebral angiogram
"Please do take your doctor's advice, Elaine and take care. Make sure you take some time out for you…"
yesterday
Elaine Henzler replied to Elaine Henzler's discussion pulsatile tinnitus in EYE and question about cerebral angiogram
"thank you David and everyone for concern. New neuro. told me today I have Carotid cavernous fistula…"
yesterday
Trish Williams replied to Trish Williams's discussion Help with Abdominal /Pelvic pain
"I have come to the conclusion that the discomfort is partly due to scar tissue. I will be seeing a…"
yesterday
Ben posted a blog post
Just the Stats:
Communities: 35
Friends: 42,000+

In this issue

Featured Spotlight
What's New?
Fea…
Tuesday
bryony bair replied to Trish Williams's discussion Help with Abdominal /Pelvic pain
"I have bladder spasms for some unknown reason that are very painful.they feel like labor contractio…"
Monday
Kristin Conley replied to SK's discussion What type are you, and was it your first diagnosis?
"Thank you all for your kind words. I have been tired and still have a dull pain in my chest but no…"
Monday
scott o posted a discussion
Amazon is running a new promotion for Amazon Smile, their program that gives money back to Non Prof…
Monday
David Kelly replied to SK's discussion What type are you, and was it your first diagnosis?
"Thank goodness you are home and better, Kristin. Thanks for sharing.
Please do take care of yourse…"
Monday
David Kelly replied to SK's discussion What type are you, and was it your first diagnosis?
"We all hope you do really well, too, Elaine. How are you?"
Monday
Elaine Henzler replied to SK's discussion What type are you, and was it your first diagnosis?
"Kristen, I am praying you are doing better now. I just read your post and was sorry all of that ha…"
Monday
bryony bair left a comment for bryony bair
"Thanks Scott O.this is set up very differently that my fb groups.lol I'm learning...I'll get there…"
Sunday
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