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. 

Tough cookie....

As of today, I am literally stuck on either the couch or my bed.  Knee wrapped in a support brace, even though my knee is already locked up and unable to use.  I am at a loss of words or ideas trying to prevent dislocations from happening or trying to keep my chin up.  I am what my mother calls a "tough cookie" but I'm sick of the hospital, doctor visits, medications, being inactive (which is not like me what so ever), and sick of making arrangements for my kids due to being hospitalized…

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6 Replies · Reply by Bethanne christensen on Monday

So I'm off to Sweden to get married!

So sorry. It seems like there is always something going wrong, keeping me from being active here. It's so great to see more people posting! Thank you so much to other admins who have been keeping things up.  My flight leaves tomorrow and I'm rushing around like a chicken with my head cut off.  I never pack last minute. I usually pack 2 weeks ahead if not more but it seems the universe has been against me. I was stuck in bed the past month because of bursitis. I got steroid injections last…

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6 Replies · Reply by Michaela May 15

Thumb Surgery

Hi All, I am really new to EDS, only diagnosed last week and so still have a million questions! Please forgive me if I seem really naive about anything. I have been diagnosed with Hypermobile EDS and last year during a subluxation of my thumb, sustained an avulsion fraction, where a piece of bone breaks off. This was not diagnosed for almost a month as the Nurse Practitioner didnt feel the need to x-ray a subluxation, although this is standard medical practice here. After diagnosis I was…

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1 Reply · Reply by Bethanne christensen May 14

Herniated Disc - Is surgery even an option?

Hi All! I have EDS hypermobility type and have been dealing with herniated discs since 2009. I have herniated my L5-S1 disc 12 times in the last 6 years, treating it with steroid shots and physical therapy. This past time (9 weeks ago) I herniated it really badly. I had an MRI and it shows compression on my S1 nerve root. I got bilateral S1 steroid shots (5 days ago) and while I'm experiencing some relief, I'm still having intermittent nerve pain in my legs, which has never happened before. My…

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7 Replies · Reply by Bethanne christensen May 13

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Bethanne christensen replied to Sherilynn Reno's discussion Tough cookie....
"It probably feels like Tuesday will never get here! You want to think that surgery can get you bac…"
Sherilynn Reno replied to Sherilynn Reno's discussion Tough cookie....
"Wow! I never would've guessed that! Although, my children's pediatrician was the one that led to…"
Bethanne christensen replied to Sherilynn Reno's discussion Tough cookie....
"Yep, that always amazes me when a ortho doesn't know that diagnosis, how can that be? I have a fun…"
Sherilynn Reno replied to Sherilynn Reno's discussion Tough cookie....
"Thank you both so much for the hugs! You truly can't imagine how much they mean to me. Yesterday,…"
coheteia left a comment for coheteia
"Thank you Dancermom!"
May 22
dancermom left a comment for coheteia
"Welcome, coheteia, to this supportive community. Feel free to open a discussion to introduce yourse…"
May 22
Bethanne christensen replied to Sherilynn Reno's discussion Tough cookie....
"I can soooo empathize with what you are going through. All of your thoughts are exactly my own. So…"
May 22
Tina Amadio replied to Sherilynn Reno's discussion Tough cookie....
"Hey Tough cookie! : )
Not sure what type you have. I have type 3. As frustrating as we all know how…"
May 22
coheteia updated their profile
May 22
Sherilynn Reno’s discussion was featured
As of today, I am literally stuck on either the couch or my bed.  Knee wrapped in a support brace,…
May 22
coheteia is now a member of Ehlers-Danlos Syndrome Online Support Group
May 22
Sherilynn Reno posted a discussion
As of today, I am literally stuck on either the couch or my bed.  Knee wrapped in a support brace,…
May 21


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