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. 

Medication Patch Frustration

Hey everyone! I hope this post finds everyone feeling well this morning. I'm wondering if anyone has some advice about how to keep medication patches, such as Fentanyl, on your skin for the full three days. I have EDS Type III (known to have somewhat velvety skin) and the patches don't want to stick to my skin. I've tried to put Tegaderm patches (kind of a second skin patch)  over my pain patches and that doesn't seem to work either, especially if my skin gets at all moist. Does anyone out…

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Anyone out there??

Hi everyone, I'm a 16 year old girl from Ireland with EDS Vascular type and I would love to talk to someone with EDS Vasucular Type (Preferably close to my age) because I don't know anyone else who has EDS, and nobody else understands what it's really like to have EDS, especially Vasucular Type. It would be amazing to actually meet someone with it, because as you all know EDS is not the nicest thing to have, and it would just be so nice to talk to someone who can actually relate to me! Thanks!…

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1 Reply · Reply by Kara Burrus Aug 11

Eye trouble

So something weird has been happening with my eyes. My sight has been declining since November for some reason. At this point, I can't read anything at a distance, even with my glasses.  I saw an eye specialist today and rand a ton of tests and.... they came back normal ugh. My eyesight is bad and glasses change wont fix that apparently. They don't know why it changed rapidly or why I have double vision/halos since my retina is fine. He wants me back in two weeks for additional tests and then…

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2 Replies · Reply by Michaela Jul 25

New feature on this Ning network

Hello, members, we can now leave status updates on this network to let others know how we are doing. There is a white box on the Activity Feed as well as on your own page that says "What are you up to?" You can type a comment in there and share it to the group. Try it, and let us know what you are up to today. :) 

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1 Reply · Reply by Michaela Jul 12


ModSupport left a comment for C jane go
"Welcome, glad you found us. jump right in"
C jane go is now a member of Ehlers-Danlos Syndrome Online Support Group
Having a hard day. Lots of pain.
Kate posted a discussion
Hey everyone! I hope this post finds everyone feeling well this morning. I'm wondering if anyone ha…
Kate updated their profile photo
ModSupport is now a member of Ehlers-Danlos Syndrome Online Support Group
BranB updated their profile
Aug 14
BranB left a comment for BranB
"Hey Michaela, I was actually wondering if you'd have any interest in joining something I have been…"
Aug 14

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