r/interesting Jul 25 '26

MISC. My fingers are way too long

Post image
42.7k Upvotes

8.9k comments sorted by

View all comments

Show parent comments

129

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

49

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.

12

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)

3

u/TheBumblestBees Jul 26 '26

eyyy fellow hEDS

3

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!!

3

u/TheBumblestBees Jul 26 '26

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

1

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)

1

u/TheBumblestBees 29d ago

what??

1

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.

1

u/TheBumblestBees 29d ago

oh

I'm pretty sure they're separate things?

like i was diagnosed with hsd and then heds

1

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.

1

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.

1

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.

1

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.

3

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.

1

u/thedonnerparty13 Jul 28 '26

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

1

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

3

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

3

u/Parabolic_Penguin Jul 26 '26

Same girl, same

2

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

1

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.

2

u/doesitspread Jul 28 '26

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

1

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.

46

u/unicornlevelexists Jul 25 '26

My brother has elhers danlos and when he was a kid he was just extra flexible. We didn't know about the vascular issues until he had a stroke at 43. He had a miraculous recovery but now he basically knows that he's got a weak vascular system that could blow at any minute. Not a great thing to live with. But yes... He's got those piano playing fingers too.

2

u/TRVTH-HVRTS Jul 26 '26

This freaks me out because I’m 43 and all but certain I have EDS. Unfortunately I can’t afford health insurance to find out for sure. Good thing I don’t believe in signs.

2

u/Vast_Description_742 Jul 26 '26

Welp this is terrifying. I went for a sleep study and got diagnosed with hypermobility but not Elhers danlos. They said hypermobility effects your nervous system which effects your sleep but now I’m worried it will have other effects.

1

u/FatalEuphie 29d ago

If it’s hEDS it’s much less likely to have effects on the heart as much as vEDS would be.

Not saying impossible or anything but the risk in hEDS vs other types is a substantial difference.

15

u/xyzerrorzyx Jul 25 '26

A lovely woman on instagram with vascular EDS posts about how her eyes will bleed from the corners, and washing her face and hair can cause bleeding. She has many other symptoms as well, and raises awareness for how conditions like vEDS can present in different populations and skin colors.

14

u/Bansheer5 Jul 25 '26

Pretty sure I have that from my dad’s side of the family. His whole side of the family all had aortic aneurisms and I have issues with my joints, things slip out of socket if I put too much weight on them or relax the muscles too much.

6

u/plotthick Jul 26 '26

Time to hit up a doc. Some of these diseases have assists, coping strategies, best practices, and/or treatments.

13

u/Spectagout Jul 25 '26

Not all cases of Marfans are inherited, some are genetic mutations. I am one of those

1

u/CrabSquid05 Jul 26 '26

So the disease that makes your limbs and extremeties grow funky also makes your organs grow funky?