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. 

my mother never had the chance to tell me there'd be days like these. ..

Hey there everyone, I don't mean to be a downer and I apologize if I come across as anything but positive because generally until recently I've been a perpetually optimistic spiritualist able to take any challenge and accept it as being a valuable lesson and opportunity for growth. However lately I've been struggling more than ever with my depression and anxiety as my condition seems to be worsening quickly even as I wait for my testing and diagnosis. My doctor has sent me to be tested asap out…

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3 Replies · Reply by Ginger 6 hours ago

I'm back from my Swedish wedding!

Hello all! I'm back in Florida. The wedding went great but it's not over yet. Sorry but I still wont be able to keep up with admin duties for a bit longer. The US wedding is coming up shortly and then I'm going to need a bit of a cool down to recover from these past couple of very intense months.  In the meantime I can share some things with you! First off here is a link to the livestream of the entire wedding. It's not super exciting but you can see myself and my love in person so that's fun,…

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4 Replies · Reply by dancermom Jun 22

New Here w/ No Official Diagnosis & Losing Hope

Hi,I am new to not only his forum but also to feeling the way that I've been for the past 6 months. I was in average health last year, until around the end of October, early November I started to have frequent fainting spells and sudden bouts of extreme fatigue to where I was even falling asleep while driving. I am a property mgr and have to drive to different locations to conduct showings, however, I was also finding it hard to walk short distances or up a couple of steps without getting…

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10 Replies · Reply by dancermom Jun 17

Type 3 complications. Who can relate?

I have type 3. I'm 44 years old. I gained 30lbs in what feels like overnight. I know from this, is why I have plantar Faciitis. How can I work out, if it's hard to even walk? My phys therapist is against cortisone shots, but my rheumatologist is the one giving them to me and is not against it. Granted, I can't get more than 3 shots in one year as it can cause problems.I also have IBS for the past 1.5 years. Can anyone recommend the best probiotics? Best way to desribe this pain and…

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5 Replies · Reply by Jay Jones Jun 7

Weight ...Gain Program?? I know, unheard of!

My fellow EDS friends! I am on a search of a certain program, perhaps one of you has this answer! Long story short, my weight has dropped to a concerning level, as my faulty GI tract, and abdominal muscle spasms  make absorbing nutrients a challenge. My doctors (the ones not fully understanding of EDS) want me to enter into a program for a few weeks to assist with weight gain, otherwise the next step is a feeding tube. I would like to avoid that of course, but would be seeking a program  with…

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4 Replies · Reply by Jay Jones Jun 7

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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9 Replies · Reply by Sherilynn Reno Jun 5

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


BranB and walkingspirit are now friends
3 hours ago
Ginger replied to walkingspirit's discussion my mother never had the chance to tell me there'd be days like these. ..
"I am of the conclusion that this condition is undoubtedly too complex for some people to understand…"
6 hours ago
lightbulb updated their profile
8 hours ago
Dawn Laughlin replied to walkingspirit's discussion my mother never had the chance to tell me there'd be days like these. ..
"Sadly this condition can show you who your true friends are. I never had a huge friend group, so t…"
15 hours ago
walkingspirit’s discussion was featured
Hey there everyone, I don't mean to be a downer and I apologize if I come across as anything but po…
23 hours ago
dancermom left a comment for lightbulb
"Welcome, lightbulb, to this supportive community. Feel free to jump right in by posting a discussio…"
lightbulb is now a member of Ehlers-Danlos Syndrome Online Support Group
walkingspirit replied to walkingspirit's discussion my mother never had the chance to tell me there'd be days like these. ..
"To continue along those lines has anyone else here had the experience of being pretty much dropped…"

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