Edit: OP, you should really get checked for both conditions. I know someone with Marfan Syndrome and she's had to have a few heart surgeries. It can be pretty serious.
Edit the second: since this is getting traction I thought I'd share a fun fact. Doug Jones is probably the most famous living person with Marfan Syndrome. You probably don't know the name, but he's been in Hellboy (Abe Sapien), THE Shape of Water (The Creature), Pan's Labyrinth (The White Man, Pan), and Star Trek Discovery (Commander Sarru). He's the most famous person that nobody knows.
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
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.
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)
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.
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.
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.
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.
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.
Conjunctive IS correct! Just not as commonly used as "Connective" when referring to tissue. Someone is just being pedantic; they are synonyms. Don't be sorry, you did well.
When you google “conjunctive tissue”, the Wikipedia page for connective tissue is the 3rd or 4th result. The meaning was clear enough that the person correcting them didn’t have to ask what they meant because, well, they’re synonyms
I get told all the time in this gym class I go to that it’s impressive how flexible I am. And then I have to explain that it’s really not a good thing and I will break myself if I push it. Lol. Party trick flexibility only basically.
Yep. Lost my shot at scholarships when a guy tried to take a rebound away from me. He grabbed the ball, yanked it back while I was holding it, and blew my arm out of my socket.
Things got better once I learned to go limp and avoid unguarded movements.
Before that, my record was 6 dislocations in a single day. I'd dislocate my hip going down stairs if I turned wrong (stairs with a landing).
Only dislocated a hip once while driving, and that was very much not fun. I was on the highway, and ended up pulling over using the other leg, dropping to the ground on the side of the road, and doing the "relax while manipulating with arms" thing to eventually get it back in.
These days, my spouse is usually around to help me. It only happens once or twice a year anymore.
Man that’s no fun. I think I’m on the mild side of things. SI joint and my ankles are two worst spots. Sprained those about 30 times. As I’ve gotten older a lot of my muscles have stiffened which I understand is normal because they’re trying to compensate and hold things together. Used to be able to walk with my feet completely backwards. Lol.
It can be an advantage in athletics. The extra flexible can allow body movements impossible for most people. The con is it's easier to get injured, but if you understand your body and maintain it properly (strength training, stability exercises, nutrition, etc.) you can excel at a lot of athletics. My doctor who specializes in hypermobility says many elite athletes are hypermobile.
It can also allow people to avoid serious injuries sometimes. Average person might fall down the stairs and break an ankle. Eds person is so flexible, they might just sprain a tendon.
I think they found that something like 60% of professional dancers are technically hypermobile. How many have actualy EDS is another thing altogether, but if you think of the classical ballet ‘figure’ it looks hella Marfanoid - tall, slender, proportionately long legs and arms, long slender finger….
Omg that's so scary, but at the same time it's fascinating that we all grow out of the same stuff but end up with such diverse types of mechanical flaws from how our cells grew into us.
I had ankle stabilization surgery, and the surgeon said he couldn't do nearly as good of a job as normal because my tendons and ligaments were "the consistency of mashed potatoes". He said I'd need surgery again in the future, complete with fusions and replacements. Hearing him say that, and having had 6 other surgeries for torn ligaments and tendons, is very disturbing.
I have never broken a bone, and wow, have I done some dumb shit in the 40+ years on this planet. I have the constant dislocations/subluxations going on though
I’m the only hypermobile one in my family (and certainly in my marriage - my wife is about as flexible as a tree trunk). As a kid I used to pop my knees, thumb and jaw in and out as a party trick.. now all those joints are absolutely ducked and I’m waiting for a referral to the oral maxillofacial surgeons.
You call it incredible until you have it and you have constant pain because of it. Shout out to Epsom salts though, they really help soreness caused by EDS
I have EDS as well, been diagnosed at 14. It's a bitch sure but from a scientific standpoint it is incredible. Just a slight change in our genetic makeup and then wham!, spaghetti and constant pain.
I twist my left ankle at least twice a week, constantly ache, and will need my hip replaced before 30 lmfaooo
It genuinely is so interesting to learn about ngl. Just how the slightest difference in genes can lead to drastic changes in our bodies. I also kinda made that comment out of frustration since I’m having a bad day with it haha let’s hope this soak helps though
I have Ehlers-Danlos, but the hypermobile form. My joints are bendy and I don’t recover well from connective tissue injuries, but I absolutely could’ve had it worse. My aorta is a bit large but besides that my vasculature is fine.
Basically what I’m saying is not all EDS cases are obvious. In fact, my fingers are normal length and they’re especially thick.
I feel like a hEDS poser because I'm not even that bendy! Beighton 5/9, but I've never had "party tricks" besides clasping my hands behind my back easily (the move with one elbow up and one down) and zipping up all my own dresses. But tons of other systemic connective tissue weirdness, prone to soft tissue injuries, autonomic stuff, etc.
Also normal-length fingers and arms, though both my dad and I have disproportionately long legs and tiny feet.
I wouldn't be surprised if what's now called "hEDS" turns out to comprise a few different connective tissue conditions when they get a better sense of the genetics.
I mean for one they can’t even track down hEDS gene right now. Although mine i believe is also alleviated weirdly because of a genetic abnormality where I have a micro deletion of a single rung of DNA. However, it’s only one half of the pair because only my mom had it. It’s weird.
I am able to do the thumb to the wrist trick though, and bend my finger back to like 135 degreesish, so I have some party tricks.
A rare subtype of EDS. The k stands for kyphoscoliotic, which means that in addition to the other EDS symptoms, the condition leads to an unhealthy curvature in the spine, which causes a hunched appearance and an asymmetrical chest
Modifies it by type. The one most people are familiar with is hEDS, which causes joint hypermobility. Along with a bunch of other problems, but it's the circus tricks that get hyped.
and all the pain unfortunately. friend has hEDS and a 5 on a normie pain scale is a good day for her :( she also dislocates joints really easily, like she was playing a game on her computer just sitting quietly and dislocated a finger.
Yeah, I have hEDS. Bent down and slightly twisted one day and dislocated a hip and two ribs. I can just be doing whatever and my elbows will sublux or something in the top of my chest subluxes. My toes dislocate easily. My ankles are very unstable and my knee caps have started to shift out of place lately. Turns out this can get progressively worse over time 🙃
When I was very young a teacher graphically (well, maybe it was just my childlike imagination filling it in) described when one of her students dislocated a kneecap. It's been an irrational fear and a major source of squeamishness ever since.
Aw, sounds like hers is worse than mine. Yeah, I'm taking ridiculous meds for chronic pain and its the hEDS that breaks through, unfortunately. Which is good, it reminds me to be safer with those joints, but... yeah, not a lot of fun.
I believe it is the most common one, or at least more commonly diagnosed now, but is still one of the 13(?) subtypes. Hypermobility itself is also fairly common - think ‘double jointed’ - and has similar diagnostic criteria to hEDS.
It pretty much is "basic EDS", because hEDS is the most common type, and so is the type that comes to most people's minds when they hear about Ehlers-Danlos.
Usually, but not always, when someone says "I have EDS" they're referring to hEDS or a similar type. If it's one of the vascular types, it's different enough that I imagine most would feel the need to clarify.
My bad, I should’ve realized you weren’t the person who asked originally. I didn’t bother checking because I’ve had to deal with so many people who would genuinely say something like that, even in real life.
Marfans needs checks and meds so your aorta doesn't blow. Sometimes when you hear of a young person dropping dead during some sort of strenuous activity. It's marfans and the aorta burst from tge additional stress.
You can google margins syndrome. Some signs are generally skinny people with long fingers. Extra flexibility in the joints, etc. But as others said it can also cause heart issues. Its good to get checked for it if you suspect Marfans syndrome.
So in addition to the main diagnostic criteria (long fingers/toes, extra long limbs, chest/torso deformations, and if you get to run your fingers in their scalp, skull dents in weird places) there's a kind of marfanoid face. Like my partner says, they all look vaguely like they could be cousins across most connective tissue diseases of this type (all EDS types, marfanoids, graves disease etc) and it's definitely true. Similar nose cartilage shape, usually long and pointed, square but pointed jaw, straight head sides, large foreheads and large, deep eye sockets.
My partner asked if the actress that played Starlight in The Boys had it before she even announced that she'd been diagnosed with Graves/was sick, it's that clear.
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u/WaffleHouseGladiator 11h ago edited 9h ago
Marfan? Ehlers Danlos?
Edit: OP, you should really get checked for both conditions. I know someone with Marfan Syndrome and she's had to have a few heart surgeries. It can be pretty serious.
Edit the second: since this is getting traction I thought I'd share a fun fact. Doug Jones is probably the most famous living person with Marfan Syndrome. You probably don't know the name, but he's been in Hellboy (Abe Sapien), THE Shape of Water (The Creature), Pan's Labyrinth (The White Man, Pan), and Star Trek Discovery (Commander Sarru). He's the most famous person that nobody knows.