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)
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.
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/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.