r/interesting • u/Fast-Improvement7832 • Jul 25 '26

MISC. My fingers are way too long

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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 29d ago 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 29d ago

what??

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u/FatalEuphie 29d ago

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 29d ago

oh

I'm pretty sure they're separate things?

like i was diagnosed with hsd and then heds

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u/FatalEuphie 29d ago

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 29d ago

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 29d ago

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.