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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    Have a pleasant holiday weekend

    I hope all of you have a lovely holiday weekend and spend some quality time with family of friends. Happy Easter!

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    Started by dancermom 1 Reply · Reply by SuzieDO on Sunday

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    Ben's Friends Member Survey

    We are working with a non profit consulting firm called Bridgespan that helped us put this survey together to help us quantify the benefits of Ben's Friends. The hope is that we can use the data to make the communities better and to apply for grants so that we can serve more patients in disease communities that we do not currently serve. If you have a minute today, we invite you to take our short survey to help us prove that getting support in a community improves one's health and outlook.…

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    Started by scott o 1 Reply · Reply by dancermom Mar 21

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    Oldest son, shoulder surgery soon, if he can educate some Wyoming doctors and stop "freaking them out"!

    I have 4 "kids" (all grown, only 2 with any signs of EDS, or so I thought!). My two youngest,20 year old daughter is here in Wisconsin going to school a short distance away, And my 24 year old son both have signs of EDS. My oldest sons live in Wyoming and are married, one with with my biological granddaughter, the oldest has adopted his wife's daughter from a previous relationship. These two have very few signs or symptoms of EDS, thank goodness! Our family is extremely close, not a day goes by…

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    Started by Puggles 2 Replies · Reply by Michaela Mar 18
  • Hello! Symptoms question: could I have EDS?

    Hey there everyone. My name is Laura, and I've repeatedly come across reports of patients with Chiari who also have Ehlers-Danlos syndrome, and I've started to wonder if I could in fact have EDS as well. I've been struggling for the last year physically, and I've been through a gauntlet of tests and specialists and we still don't have a clear picture.I'm wondering because I have several symptoms of EDS, but not some of the more definitive ones. I don't notice velvety skin, haven't noticed slow…

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    Started by Unwritten 6 Replies · Reply by Michaela Mar 17

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.

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Moderator
scott o left a comment for Amy Wood
"big welcome Amy! One tip, if you have specific questions it's best to start a New Discussion…"
Monday

Moderator
SuzieDO left a comment for Amy Wood
"Welcome Amy!  I'm Susan. I'm 26 and in medical school.  I have EDS 3 and have…"
Sunday
Profile IconAmy Wood and Jessica K. Price joined Ehlers-Danlos Syndrome Online Support Group
Sunday

Moderator
scott o left a comment for Jessica K. Price
"So glad you found us Jessica! Welcome! One tip, if you have specific questions it's best to…"
Sunday

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Puggles left a comment for Jessica K. Price
"Hi Jessica and a very big WELCOME! I'm so happy you found us! I hope you find a lot of support…"
Sunday
Armando A posted a blog post
Never give up.
Just wanted to share this inspiring video. Laugh often. Love a lot. Be strong. Never give up.… See More
Sunday

Moderator
SuzieDO replied to dancermom's discussion Have a pleasant holiday weekend
"Happy Easter! Take it easy and enjoy your family time!"
Sunday

Moderator
dancermom posted a discussion
Have a pleasant holiday weekend
I hope all of you have a lovely holiday weekend and spend some quality time with family of friends.… See More
Friday

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dancermom left a comment for AngeSF
"Welcome, SF, to this supportive community. I know many stroke patients on the other networks, and I…"
Mar 31

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dancermom left a comment for Kate
"We are volunteers here, Kate, but the other moderators do have EDS, as do the members, and you are…"
Mar 31
Kate left a comment for Kate
"Thanks so much dancer mom! You're so sweet. And thank you for the advice Scott. I haven't…"
Mar 30

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scott o left a comment for AngeSF
"Giant welcome AngeSF! this is a great place! One tip, if you have specific questions it's best…"
Mar 30

Blog

  • Never give up.

    Just wanted to share this inspiring video.

    Laugh often. Love a lot. Be strong. Never give up.…

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  • March 2014 Community Newsletter

    Dear EDS Support Family and Friends,

    March 2014 is an exciting month for Ben’s Friends, as everything seems to fall into place! But before we share the good news, we invite you to participate in a brief survey on the positive impact…

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