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. 


Permanent Bursitis Solution?

It's back again and it's really bad. I've been in denial for three days but I woke up today already crying in my sleep and I just can't ignore it anymore. This was triggered by the Barometric pressure getting two heavy. Which has been the trigger the past 3 times. I have no control over that.  I tried looking it up and haven't found anything useful. Does anyone have any advice for a permanent solution? I can't keep doing this. I really ca't. I can handle near anything else. If anyone has a…

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11 Replies · Reply by SK Oct 16


I am Nikki, 22, and I have Eds type 3. I am having a very difficult time trying to get help with everything. In 8 years I have had over five hundred dislocations, 7 surgeries, and alot of hassle. Most surgeons where I live refuse to touch me because nothing seems to work. They have also labeled me as a drug addict because I have been on alot of pain killers, which I am far from being an addict. I am at my witts end. I don't know what to do or where to turn anymore. Not many doctors here have…

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5 Replies · Reply by Michaela Oct 16

Post Op

I am still alive :) Things went amazingly and I could not have asked for a better surgeon.  He actually called me his self the evening following my surgery to check on me and see how I was feeling and go over any questions or concerns I had and to tell me my discharge info again in case I did not remember anything from the hospital due to the medication.  What an awesome doctor right?  Normally I only get a phone call from the hospital the next day. I went in for my post-op today and he was so…

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16 Replies · Reply by SK Sep 29

Are there any doctors/specialists in Ontario, Canada that deal with EDS?

Hi. I'm new to this site and also relatively new to this diagnosis (February of this year). I've been dealing with dislocating and subluxing joints for most of my life and the chronic and acute pain that goes along with it (like most hypermobile type EDS people do, I think?).I live just east of Toronto, Ontario, Canada and have not been successful in locating a doctor, or specialist that deal with EDS, or have any real knowledge about it. I was referred to the geneticist first (of course that…

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4 Replies · Reply by SK Sep 29

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Ben posted a blog post
Just the Stats:
Communities: 38
Friends: 43,500+
Connecting to others in a similar circumstance is…
10 hours ago
SK replied to Michaela's discussion Permanent Bursitis Solution?
"I know Kristin, if there were any way for me to control the affects of barometric pressure on the b…"
Oct 16
Michaela replied to Nicole Panneitz's discussion help!
"(resending this post without contact info. If you want to chat, message me and I can send you conta…"
Oct 16
Michaela replied to Michaela's discussion Permanent Bursitis Solution?
"Thankfully steroid injections so work. I'm still recooping from the treatment but the inflammation…"
Oct 16
Kristin Conley replied to Michaela's discussion Permanent Bursitis Solution?
"I am so sorry you are going through this love. :( I don't have bursitis, but I do have osteoarthri…"
Oct 16
SK replied to Michaela's discussion Permanent Bursitis Solution?
Oct 4
SK replied to Michaela's discussion Permanent Bursitis Solution?
"Hi MIchaela,

I just had another gal on another BF site whose hip bursitis has flared up, and don'…"
Oct 4
Michaela replied to Michaela's discussion Permanent Bursitis Solution?
"If I could, I would. =( I'm going to be stuck here for a long time yet though."
Oct 2
Jay Jones replied to Michaela's discussion Permanent Bursitis Solution?
"Hi Michaela,
I am so sorry you are going through this. Have you considered trying on a dry climate?…"
Oct 1
Michaela replied to Michaela's discussion I have returned! (Official back from vacation post)
"Thank you, I had a great time!"
Oct 1
David Kelly replied to Michaela's discussion I have returned! (Official back from vacation post)
"Great photos, Michaela - looks like you all had a great time, with the exception of the rude taxi d…"
Oct 1
Michaela replied to Michaela's discussion Permanent Bursitis Solution?
"It's been my hips. Two years ago, I woke up one day in December to my hips being painfully swollen.…"
Oct 1



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