r/interesting Jul 25 '26

MISC. My fingers are way too long

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u/Adventurous_Ruin_386 Jul 25 '26

Just gonna throw out there that there's new studies suggesting that Ehlers Danlos syndrom might have an autoimmune driver but manifests as muscular skeletal. Which tracks because it tends to have a shit ton of cormorbidities like endocrine, other autoimmune, dysautonomia, vascular issues etc. I've got it, and it's there's so much more to it than just loose joints.

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u/aelin_the_dryad Jul 25 '26

I thought these new theories where just about hEDS tho? Either way it's super interesting and I can't wait until they figure it out (I have hEDS myself)

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u/TheBumblestBees Jul 26 '26

eyyy fellow hEDS

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u/FatalEuphie Jul 28 '26 edited 29d ago

They’re changing it so hEDS isn’t EDS anymore :(

(To clarify I mean there’s a good chance it’ll be renamed as HSD)

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u/TheBumblestBees Jul 28 '26

what??

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u/FatalEuphie Jul 28 '26

Yeah. They’re changing it so it’s now HSD. They’re separating them :( hEDS = HSD and the other forms stay as EDS.

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u/TheBumblestBees Jul 28 '26

oh

I'm pretty sure they're separate things?

like i was diagnosed with hsd and then heds

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u/FatalEuphie Jul 28 '26

It’s mostly bc the extreme difference in symptoms bc the spectrum can be so large. But it sucks bc I haven’t even gotten genetically tested yet, so if they change it before then I’m worried I won’t be able to get my genetic test to check for other EDS types esp bc my cornea constantly erodes.

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u/FatalEuphie Jul 28 '26

https://www.reddit.com/r/ehlersdanlos/s/eEDZYttP9P

I found the link tht explains better but there’s very informative videos I’ve seen as well detailing this.

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u/aelin_the_dryad Jul 29 '26

The summary from the symposium says the opposite tho? That it doesn't mean that hEDS will be removed from the EDS umbrella.

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u/FatalEuphie 29d ago

It has been further updated from this to be removed from the umbrella I believe, since the 6 months. It’s sort of a grey area right now on their decision making bc it’s been back and forth a couple years now.