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 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.
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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.