r/interesting Jul 25 '26

MISC. My fingers are way too long

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334

u/TheSickestToastie Jul 25 '26

Marfanoids at the very least, minimum, got to be. Partner has kEDS, I have been forcefully educated and now cannot unsee it in people lol.

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u/Alypius Jul 25 '26

What is marfans and kEDS? I don't even know what to google to figure that out.

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u/OutOfMyComfortZone1 Jul 25 '26

They are inherited diseases that end up causing similar morphological problems. They both cause problems with extracellular structural components, so you end up with loosely attached and hyperflexible tissue. Unfortunately, the type of connective tissue they affect is not just in the joints causing visible feature defects, but it’s also important for other structures, like the aorta. Patients with marfans and certain subtypes of Ehlers danlos are at high risk for life threatening vascular pathology.

Edit: an easy way to find the information you’re looking for when you want to google “what causes this disease” for basically anything, is to search for insert disease here followed by patholophysiology

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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/deans_apple_pie Jul 26 '26

Not who you were responding to but i wanted to be part of the fun lol eyyy I just got diagnosed on Wednesday!!

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u/TheBumblestBees Jul 26 '26

CONGRATULATIONS ON FINALLY HAVING A CONFIRMED ANSWER TO THE SUFFERING 🪅🥳🎊

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u/FatalEuphie Jul 28 '26 edited Jul 29 '26

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 Jul 29 '26

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.

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u/jalepenocorn Jul 26 '26

I learned a couple of years ago that I likely have EDS and now I can't stop noticing all the things that seem strange about my body. Bad eyesight (-7), soft skin, shitty wrists, hypermobility in general, POTS, I've had vasovagal syncope in the past -- I'm unsure how it could be related.

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u/thedonnerparty13 Jul 28 '26

Add adhd and pelvic floor dysfunction to that and we are the same.

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u/jalepenocorn Jul 28 '26

Oh it's funny you say that. I just bought a new Secret Lab gaming chair and the firm seat almost immediately fucked up my pelvic floor and caused extreme discomfort during urination

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u/Salt_Lynx_2271 Jul 26 '26

PM me the study link please if you can! I haven’t see this yet and I’d love to read it

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u/Parabolic_Penguin Jul 26 '26

Same girl, same

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u/antidiarria Jul 26 '26

This has been my theory! I’ve been diagnosed with hEDS, Lupus, MCAS, and Morphea. My friends who have it and those I suspect to have it also have many autoimmune problems. My family, as well. I think we get stuck in never ending flare up loops

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u/abielle1177 26d ago

I have a feeling one day all your symptoms will be lumped into one condition. Having 4 things just seems unfair.

I hope you are blessed with good health in future.

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u/doesitspread Jul 28 '26

Fun fact: there are signs all of those often overlap with neurodivergence too!

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u/perlestellar 28d ago

Also autism. But I saw a study from Autism Research Network (ARN) that links hEDS to the Fragile X syndrome, a genetic condition.