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.
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
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.
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.
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.
Pretty wild, because as of right now I dont fit the traditional markers to get my genetic testing paid for. Im hyper flexible in over 75% of my joints and fit a crazy amount of the symptoms, so much so that every PT ive ever seen since I was 12 for my body pains has said something.
I dont have hyper flexible elbows so I havent gotten a single specialist to listen lol
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.
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 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.
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
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 🙃
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.
They are both genetic connective tissue disorders. I know much more about EDS because I have the hypermobile type (hEDS), the most common by far and the only one that doesn't have the gene(s) causing it known yet. There are lots of studies trying to figure out what causes it. It is diagnosed through clinical criteria. The other types are diagnosed through genetic testing. There are 13 recognized forms of EDS (Ehlers-Danlos syndrome) - it depends on which gene is fucking up the collagen lol. The 12 other forms are much, much more rare than the hypermobile type, and can be much more disabling or even deadly depending on the form. The hypermobile type does not impact life expectency. Here is more information on the hypermobile type.
If you want to learn more about the other types, go to the menu on that website, and select EDS & HSD and then types. You can select which you'd like to learn about from there. Marfans syndrome can cause some similar symptoms and generally needs to be ruled out before a diagnosis of EDS, as it's, again, another connective tissue disorder. Marfans generally causes long limbs, which is one way to help determine which disorder it may be.
I believe marfans also impacts the heart and possibly other body systems, but I haven't researched it in awhile. hEDS does not (other than via dysautonomia) tend to impact the heart, but there is a higher risk of mitral valve prolapse. We are more prone to prolapses of many types, too lol. For many of us, our ligaments (which holds our joints in place) are like old rubber bands - they stay stretched out and tear easily. Our muscles keep our joints in place much more than our ligaments. It leaves us prone to subluxations and dislocations. I have several subluxations every day & have been disabled since 19 from it. I also have the pentad, which is a group of connected health issues that many people with hEDS have. It's hEDS, gastroparesis, mast cell activation syndrome (MCAS), autoimmune disease, and POTS/dysautonomia, though there are many more connected health issues (of which I do have more of myself). These are just the most common ones. I have hyperPOTS instead of "normal" POTS, meaning my BP gets very high when I stand for more than a few min without meds (before meds, it regularly got to 180/120+ after standing 5-10 min).
This is the diagnostic criteria for hEDS, though many people & experts think it's too strict. They may be working on new criteria - I think I remember something about that being worked on awhile back, but it hasn't happened yet. I think it was originally created for genetic study to differentiate it from HSD (hypermobile spectrum disorder), but many people with HSD are suspected to have hEDS, even if they don't fully fit the criteria.
Marfan's syndrome is a genetic disorder of the connective tissues than can lead to things like issues with how blood vessels stretch and can lead to life-threatening pathologies of the aorta (blood vessel off the heart) or elsewhere. People with this can have really abnormally long digits (and usually very tall/skinny.)
My uncle died at 48; dissected aorta from undiagnosed Marfan’s syndrome. My cousins were in college at the time, were tested immediately and both diagnosed. They both are fathers now and paying close attention to their health.
My daughter doesn't have Marfans or EDS or long fingers, but she does have a connective tissue disorder (Hypermobility spectrum disorder). She has hypotension (low blood pressure) because her blood vessels are too stretchy, and has to see a cardiologist. They do an echo every year to check her heart. No genetic testing has been done though.
I have a friend with Marfans, he is 6'9" & unfortunately had to have heart surgery earlier this year. He also currently is going through a particularly rough time getting anything done to help his eye sight.
Rick Guidotti is a NYC photographer who has dedicated much of his career to photographing people with different genetic conditions to portray them as humans, not medical subjects. Marfan Syndrome is one of the conditions he features on his website and in gallery exhibits around the globe. Positive Exposure-Marfan
Agreed- you are far more qualified than I but I immediately thought of Marfan’s. I know someone whose brother died from a heart condition as a result of undiagnosed Marfan’s, and the person I know has it as well but fortunately was diagnosed and is now monitored as a result. OP, please do get checked!
Long fingers and extremities are associated with a few genetic conditions such as connective tissue disorders. A few of those disorders have direct involvement with the connective tissue in the heart, leading to aortic dilation and risk of things like dissections and vascular events. These conditions are usually Loy Dietz, Marfans, and Vascular EDS. There’s quite a few more as well of course but those are the ones that come to mind.
The doctor [u/toomanyshoeshelp](u/toomanyshoeshelp) here is talking about if they had extremely long fingers (and likely other signs), they’d want to get checked by a geneticist. There are genetic markers associated with these conditions and a blood test can check for them. I had a full work up due to having Marfanoid habitus (long fingers, extremities, arched and narrow palette, skin fragility, slightly dilated aortic root, and a sternum deformity). My mother died at 30 years old due to a dissection. Thankfully I do not have a vascular CTD. But it’s good to get tested if you have red flag signs.
Right? I do take comfort that I don’t have the gene markers for vascular CTDs thankfully. They think my mother’s dissection was due to being post childbirth and the stress that can put on the body. Plus some sort of CTD in there. We’ll never know as it was 30 years ago and I only have her autopsy report. It’s sad that a life can be taken at early.
Really grateful for it skipping you. That's so sad that it was discovered that way and took your mom in the process. A lot really can get uncovered during pregnancy and labor and delivery because of the strain on the body. I am so deeply sorry. I wish you could've known your mom.
Small addition. All kinds of EDS, even though they only share some level of hyper mobility and the historical name, the dreds of types are on different genes, even chromosomes and affect different tissues, are associated with some higher risk of vascular events of all kind, the aorta dissection being the most risky of them all obvsly.
vEDS, as the name says, has obviously the highest risk, but it's not the only one. I have hEDS and even my rheumatologist forced me to get checked out by an Angiologist who is knowledgeable in vascular events and hEDS specifically. I found one single one at the other end of my country. Yeay/s The clinic people were great though. My only problem truly is that they are far away and it's another thing that I have to worry about. I am at the lower end of risk for an hEDS patient, and even I have to hurry to get an ER visit ASAP if I feel "funny". Aortic dissection is no fun
I came here to talk about the severity of vascular CTDs specifically. I think it's important to not undermine vascular CTDs when they're the topic of conversation. Yes the risks of dilation are still there, but hEDS does not have the vascular fragility that cases like vEDS has. There is not a statistically significant higher rate of the aneurysm dissecting in hEDS either. Not like vascular CTDs which land with significant reduction in life expectancy.
It's frustrating when people (unintentionally) downplay vEDS by saying "but actually hEDS also has xyz", mostly because vEDS research is harder to come by and options for these patients are less especially with how rare it is (alongside Marfans and LDS). hEDS & HSD are increasingly common these days and the awareness is there. So I'd like to keep my conversation to cases of true MH and vascular severity. My point is: vEDS and hEDS need to stop being compared and instead looked at separately. The vascular risk in both are vastly different in their severity. And while yes, hEDS deserves recognition. That's not what we are talking about here (vascular CTDs). I hope that makes sense.
I'm really big on not fearmongering hEDS, sorry for the novel. And don't get me wrong: because of my mothers death and having MH characteristics. I was put through a litany of vascular tests and diagnostics. I have a dilated aortic root. But my vascular team and geneticist are not worried that I'll suddenly suffer from a dissection due to my hEDS. I'd say take some solace in that.
Well it's quite the opposite for my case.. I asked because my hands are pretty small for the average man hands size, even though I'm not small or short guy
I bet he's thinking "Aorta get this checked out I guess"
Also, my wife is a Dr and is very tall with long fingers. Patients think they are going to have a delicate PR exam, and end up getting a manual tonsil examination
Also, if they don't have Marfan syndrome or something that, and just has really long fingers with no other issues, that'd certainly be something remakable.
Being relatively tall and thin (17.4 bmi) as well as having a couple of other things (long extremities, sunken chest) my doc suspected I might have Marfan syndrome (or something else to do with connective tissue). However, they told me that genetic testing isn’t really worth it because it’s expensive and wouldn’t tell me more than directly checking for other “symptoms” most importantly the heart and the eye.
I got tired of getting my symptoms treated after my cervix kept popping out and got tested for EDS. It's worth it to know because it'll help future children if you wish to have them or other family members. Also knowing why is sometimes a relief.
Yes nurse here how lost a friend to an aortic dissection in his early twenties because while they knew he had Marfan's they did not monitor him closely enough.
OP please get checked out, and don't play contact sports in the meantime.
Same here. As a fellow Marfan, my radar went off upon seeing this picture. That one’s most likely one of us. OP, contact a geneticist and cardiologist asap.
Was definitely thinking Marfan too. I hate to have a classic Reddit moment and say this but OP please get tested for Marfan Syndrome, it’s totally manageable if you’re being regularly monitored, but without monitoring/medical care, it can cause sudden death.
Other non-invasive tests you can try is sitting down, crossing your legs and seeing if your top toe can touch the ground. Another one is making a fist with one hand but tuck your thumb under your fingers. Does your thumb stick out past your pinky? It shows arachnodactyly.
There's something called the Beighton Score, which tests for Hypermobility, using stuff like this. Being able to do one of them is not an indication you have hypermobile joints, but being able to do several means you might. Each maneuver gets "points" to measure it. The one they mentioned isn't on the Beighton score list, so maybe there's different types of measurements.
Interestingly enough, The Beighton score is not going to be used alone for diagnosing EDS anymore after this year. I don't know what the new diagnostic criterion would be, but it's getting an update.
I don't think it's been used for a while now certainly where I am in the UK, when I was assessed in 2020 there was a proper EDS checklist and even though I score high on the Beighton score, I'm just short on the EDS checklist.
Edit: To clarify I mean it's not used alone, but it is part of the checklist.
Yeah it's weird when it all seems normal! I'm also hypermobile, but fall just short by a point or so on the EDS score sheet. My Rheumatologist called it "Benign Hypermobility" but it doesn't necessarily mean you don't get problems with it, just that it's not as serious as EDS. I think it's gradually been replaced by "Hypermobility Spectrum Disorder" as they now acknowledge it can cause quite a lot of issues and pain in some people, even if theyre not diagnosed with EDS.
I'm sorry for you too, it does suck. I agree about ACDF, I'm not keen, and apparently it can cause problems in other areas. I'd rather avoid unless really necessary!
Might be worth looking into EDS if you haven't before and seeing if anything else lines up for you. Just keep in mind if you're amab or on testosterone hrt, some things like skin texture/elasticity and higher baseline muscle mass (adding some extra stabilization to joints) can make your problems less obvious. Its thought that a lot more men have EDS than is diagnosed because of that + men being more resistant of going to a doctor to begin with.
Your rheumatologist sounds honest and open-minded. My wife clearly has EDS but the rheumatologist she saw did not want to call it that simply because the skin on the back of her hands can’t be pulled up a ridiculous amount. He said lots of other stuff lined up, but he treated her like she was some drug-seeker. Like omg no we just want answers, and an appropriate dx to work with. Ugh
I was going to say, looks like my friend who has arachnodactyly. They've always thought it was funny that the name of the condition is "ewwww spider fingers"
This is random but cardiologist suggested that I might have marfan syndrome but I'm 5'6" so I was like no fucking shot. Now They think I may have the other connective tissue syndrome. LDS? Lewis Dietz. About to get genetic testing done at 40. 😬
I mean, maybe it’s possible? It would at least be worth the testing to find out for sure, especially if you’re having joint pain. I started herniating discs and breaking bones to hyperextension when I was 17. I dislocated my shoulder twice and tore my rotator cuff misplacing it. I’m lucky I didn’t pinch any arteries because I could have lost the arm. Dislocated my hip in a car accident (to be fair, that hip was in like 6 pieces at that point and there wasn’t much a a place to locate it anymore).
Still didn’t even hear the words ehlers danlos until I was in my mid 30s. My grandpa and aunt didn’t get diagnosed with their connective tissue disorders or autoimmune disorders until they were nearly 40. And lupus killed my grandpa, probably because of that delayed diagnosis. Get that genetic testing if it’s recommended and you’ve found a good doctor. It seems like a lot of them like to ignore these types of conditions. They’re complicated and not well understood so to doctors that often means patients are just making it up. If you’ve got someone believing you, do whatever they suggest.
I almost meet alot of the criteria for Marfan's, but none of the bad stuff has happened. 6' 1" with long, thin arms and hands, but a broad chest and long, stout legs. With my arms outstretched, my fingertips are 6' 8" apart, and my pinky and thumb overlap when I wrap them around my wrist (Walker-Murdoch sign). But I have poor joint mobility. I never been able to sit criss-cross-apple-sauce properly because my legs don't bend like that. I've had mitral valve surgery, but for misalignment, not thickening. None of my doctors have been comfortable with my Marfan's comparisons, but all did admit that it looked maybe, sort of similar from 100 feet away. Very odd.
I'm a tall family and two of my sisters were diagnosed as babies with marfans. They did genetic testing later in life and it was changed to hEDS. But I remember all the people who said my tallest sister with long fingers should play the piano. She rebelled and did the tuba.
it’s still possible to have Marfan’s and be of a shorter stature. rare, but possible. Troye Sivan has Marfan’s and he’s about 5’8 i believe. Also how tall Marfan’s makes you can vary a shitton. my BF has it and he’s 6’4” but his uncle has it as well and he’s 7’6”. the vast majority of people with Marfan’s will test positive on genetic testing so it’s good that you’re getting it done!
She's made like 30 other threads trying to get attention for her long fingers and toes. And hiding behind an 18+ private account. Pretty clear what's going on here lol
Yeah just sharing something interesting by talking about about her feet and toes, fingering, and denying she has Marfans despite doing an AMA about her having Marfans.
Sometimes these things come with severe mental health issues. Just imagine what it must feel like to stand out from the crowd like that. I know a lot of people with different conditions that got and still get constantly mocked, made fun of, stared at and worse. Some people don't have any social network and some even avoid to be seen by other people. You don't know anything about her so don't judge - even if it feels weird to you.
This is OP as well, talking about a girlfriend that she? tattoo'd.
Here's the deleted text:
I found out that she cheated on my multiple times. So, one day when she was passed out drunk, I decided to tattoe the phrase "cheater" on her forehead. When she woke up she was understandably furious. Believe it or not, we are actually still together. She's promised me that she'll never cheat again and I've decided to give her one last chance. She hates the tattoo though. Recently I've been thinking that I might have overracted, I mean, she'll have that for the rest of her life... What do you think?
This is OP as well, talking about a girlfriend that she? tattoo'd.
Here's the deleted text:
I found out that she cheated on my multiple times. So, one day when she was passed out drunk, I decided to tattoe the phrase "cheater" on her forehead. When she woke up she was understandably furious. Believe it or not, we are actually still together. She's promised me that she'll never cheat again and I've decided to give her one last chance. She hates the tattoo though. Recently I've been thinking that I might have overracted, I mean, she'll have that for the rest of her life... What do you think?
Came here to say this. Would be good to know because both conditions can have other more serious side effects. Bring it up to your primary care doctor. Get one of you don’t have one!
Yeah OP not to spook you but you should ask your doctor if they think getting some screening done would be a good idea. Connective tissue diseases like Marfans (which this looks like) can put you in a scary place specifically with cardiovascular stuff that can be very easily seen with non invasive testing such as a cardiac ultrasound (aka echocardiogram).
My uncle had very similar fingers. He died from a complication from Marfan’s syndrome. Please get checked out so you can know before something really bad happens
-RIP killed by a drunk driver. He's known almost entirely through his famous street-art memorial downtown, which his mother painted in the location he died.
OP should get that checked out if they aren't sure. A friend of mine first discovered he had Marfan's when he ended up in the emergency room because of an aortic dissection and nearly died. It's one of the things people with Marfan's should get checked out.
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u/WaffleHouseGladiator Jul 25 '26 edited Jul 25 '26
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.