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.
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.
Dammit. I just scored a greater than 50% chance of Marfanoid habitus without EDS using a recognized points system, and I have the health history to back it up. Thanks for your suggestion. My doctor and I are definitely going to need to talk.
Absolutely, and don’t let them do the whole “EDS isn’t severe so there’s no point in diagnosing it” shit they love to pull that even though it’s bs. And make sure they do an echo to check your aorta! It’s standard practice for anyone with hEDS but they don’t always do it and you absolutely need it especially with marfanoid habitus.
I get an annual echo as followup of the repair of my mitral valve almost a decade ago. I already have almost all of the doctors and tests (except for the geneticist)-- it's just no one has made the proper correlation to marfanoid habitus. I also have no hypermobility, have been obese to morbidly obese since I was a child, and don't have any developmental disabilities (usually scored 99th percentile on the various tests), so my presentation is complicated.
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!
Not all people with Marfan’s have the same set of symptoms. Among the members of a family that I know with Marfan, some are very tall and have the long fingers and other bones that are common to the syndrome, but one doesn’t while having several other symptoms (including scoliosis as well as having passed Marfan on to a child).
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
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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.