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. 

Happy Holidays!

I hope everyone is enjoying this time of year. Spending time with friends and family and eating tons of food. I've been dealing with too much pain for the last month and couldn't walk very much. I'm happy to report that I received a motorized scooter for Christmas. It's such a blessing to be able to get out again. I was stuck at home most of the time or hobbling around with a cane and transport wheelchair. I'm looking forward to shopping and getting together with friends. I hope all of you are…

Read more…
4 Replies · Reply by Spammy Dec 20, 2015

Updating and expanding community platform to support connection among people with rare illnesses.

Ben's Friends, the network that runs this community, is a 501(c)3 nonprofit that builds support communities for patients with rare diseases. Every month we serve 100,000+ patients looking to connect with others like them. We have a wait list of 100+ communities we can't launch because of outdated technology. That is easily a million more patients we could be helping, if we only had a new home. Your generous donations can help someone suffering TODAY! You can support us creating new communities…

Read more…
3 Replies · Reply by Michaela Dec 17, 2015

Let's chat!

Members here haven't had a chat room for ... well, a long time. Today, the technical fairy waved her magic wand and **abracadabra!** we can chat. Who knew that it was possible! So make yourself at home and visit with your EDS friends.

Read more…
5 Replies · Reply by Michaela Dec 17, 2015


puffingirl15 is now a member of Ehlers-Danlos Syndrome Online Support Group
GApeach updated their profile
Cristin is now a member of Ehlers-Danlos Syndrome Online Support Group
Jan 29
ModSupport left a comment for Q
"Welcome to this quiet but friendly support community. Start a conversation! Ask away! We're glad to…"
Jan 24
Q is now a member of Ehlers-Danlos Syndrome Online Support Group
Jan 23
amurph replied to amurph's discussion Anyone out there??
"Hey Seenie! Sorry it took me so long to get back to you! I'd love to be introduced to other people,…"
Jan 7
Mommy2three is now a member of Ehlers-Danlos Syndrome Online Support Group
Dec 30, 2015
Michaela posted a discussion
This is an interesting article about some famous people with EDS! Take a look and feel free to disc…
Dec 30, 2015

Mobile App

Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now.


You're not alone.

Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum

Check the Help tab above.


Since content and usernames are google searchable, please protect your anonymity by creating a unique username.

Because we are a peer-to-peer support network, we ask that members not include honorifics, degrees or professional designations such as RN, Imam, PhD, Adv, MSW, Sr, Dr, Dame, Sgt, Rev, DO or similar in their screen name. We will not approve these after Sept 2015.

To change your username, click here. 


All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, please.
  9. Religious content must be restricted to the Prayer Group.
  10. No politics, please.

Thanks for your cooperation.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

Live Support