Ehlers-Danlos syndrome & HMS support + discussion

ehlersdanlos @ 2012-06-07T01:41:00

2012-06-07T06:43:34Z

Posted by: subluxate

Dr. Paul Christo has a podcast on EDS, featuring EDSer Maggie Buckley and expert Dr. Clair Francomano.

I haven't listened to it yet (a bit busy); morgandawn posted it, and I thought it belonged here too.

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ehlersdanlos @ 2012-05-10T20:09:00

2012-05-11T01:10:11Z

Posted by: subluxate

Here's a video made by a woman, just a little younger than me, with EDS. Her symptoms don't match mine exactly (I didn't have full dislocations as a kid, none that landed me in the hospital, and I figured out how to reseat my knees early on, and I don't have any heart symptoms), but none of us have identical symptoms.

ashbet originally linked that.

On a similar note:

Every time a joint slips or dislocates, the soft tissue connected to that joint — tendons, ligaments, muscle, fascia, blood vessels — all stretches. Because of the structural defect in collagen, all that connected tissue is stretched beyond what normal should be; high resolution MRIs reveal microtrauma, microscopic tears that start up the inflammation and coagulation cascades. But because each joint can subluxate over and over in just a single day, these microtraumas happen over and over in the same tissue without healing successfully. This was first pointed out as an EDS problem in July 2011 by Dr. Clair Francomano in her comments while presenting at the EDNF Conference: “Microtears are not visible with ordinary MRIs but are experienced by EDSers, causing pain and instability.” Dr. Francomano’s, Ehlers-Danlos Syndrome Update 2011: What We Know — And What We Don’t Know, available from http://bit.ly/HQDNwk.)

This explains, better than I ever could, what is wrong with my ankle: it subluxated very badly one day, kept sliding out of place the same day, got worse and worse, and now it's extremely hypermobile, prone to subluxation and dislocation moreso than my left ankle as a result, hurts like all hell...

That link, by the way, is a good one if you want to read about the 2011 Ehlers-Danlos National Foundation Learning Conference presentations. I got this quote from morgandawn.

[x-posted from my journal at trialia's request.]

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Welcome!

2011-12-23T19:07:49Z

Posted by: trialia

Hello and welcome, to anyone who comes across this community!

Please, if you have any interest in EDS of any type or all types, or hypermobility syndrome, stick around! :) You don't have to have the condition to join the community. I hope to build this into a good resource for support and research for people who do have EDS and their friends and families, and anyone who's just interested in learning about it.

I wish everyone the very best in dealing with what is a very complicated illness, especially if you are here looking for information because you've just been diagnosed with it. I plan on making a comprehensive link list to sites that provide accurate information about the various types and posting new medical articles I find, or linking to them, in the future. If anyone would like to help me do this for a specific type of EDS - I have hypermobility type without significant crossover features, so I'm not as 'up on' new research for the other types as I am on my own - please let me know, I'd really appreciate the help.

Welcome, and I hope this community can be of use and help to you!

~ Trialia

( Details about EDS and HMS, for those who are new to this. )

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