subluxate: Sophia Bush leaning against a piano (Default)
[personal profile] 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.

[ profile] 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

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 [personal profile] morgandawn.

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


Ehlers-Danlos syndrome & HMS support + discussion

June 2012

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