Login

Recent searches

No recent searches

Search options

Only available when logged in.
social.coop is one of the many independent Mastodon servers you can use to participate in the fediverse.
A Fediverse instance for people interested in cooperative and collective projects. If you are interested in joining our community, please apply at https://join.social.coop/registration-form.html.

Administered by:

Server stats:

501
active users

social.coop: AboutStatusProfiles directoryPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.4

#ehlersdanlos

0 posts0 participants0 posts today
Public
Cari

Had my #EhlersDanlos evaluation yesterday! Somehow, I was expecting that it would be the first part of a much longer diagnostic journey--the paperwork, the blood draws, the follow-up appointments, all of that. But he just went through my history, asked me a bunch of questions, ran me through the Beighton test, and said, yep, you meet the criteria for hEDS :blobwoah:

Public
Aphrodite ☑️ :boost_ok:

Most people fear signs of aging.

I never thought I would be this old, so I welcome every gray hair. (No wrinkles yet, thank you #EhlersDanlos and a bespoke endocrine system that affects collagen crosslinking…)

But the constantly lengthening recovery times do suck a bit. Oh well.

Public
Aphrodite ☑️ :boost_ok:

Took a bad spill today, thanks #EhlersDanlos.

Landed badly.

I’ve got massive bruises on my hands and knees.

And I’m laughing about it because why not.

I’m able to bear weight on my foot, which means it’s not fractured. I’ve got aspirin and pain meds. And I didn’t bleed.

But I can’t do a lot of manual work for at least a few days. And yeah, my body feels horrid even with opioids (no access to weed in the #UndisclosedLocation).

But I’ll recover. I always do.

My hand with a massive, slightly swollen, purple bruise stretching from halfway up my thumb to my wrist, most of the way across the palm. I landed REALLY badly.
Public
Belle (she/her)

A slightly more bite-sized version of the studies I just shared.

This is FUCKING HUGE.

First of all, it means all of us who never got a full hEDS diagnosis (or who got downgraded when the diagnostic criteria changed) probably have the exact same genetic condition.

Secondly, there’s eventually going to be able to be a TEST for this??? No more “it’s all in your head” or “it might be anxiety”

ehlers-danlos.com/new-research

Screenshot from the article, which reads: Study Overview In this study, researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD. The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis. Additionally, a fragment of collagen I was found in all individuals with hEDS and HSD, although this fragment was also present in other conditions. The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology, thus questioning the differentiation between these conditions.
#hypermobility#hEDS#EhlersDanlos
ExploreLive feeds
About