yeah i coulda picked a better site :P its ehlers danlos, a connective tissue disorder. basically our bodies make messed up collagen. theres a bunch of different kinds and affects all kinds of stuff. joint hypermobility is just the most stereotypical and obvious presentation.
i have soft skin, got a bunch of oddly placed stretch marks during first puberty, have slow bowels (3 or 4 days between dumps is normal for me), slightly stretchy skin, a little joint hypermobility, slow wound healing, my skin turns red super easily, and probably a bunch of other stuff.
how did you get tested? my Dr tried getting me multiple referrals but the long list of requirements just for testing are impossible to reach, like having a direct family member who was diagnosed. even though its a relatively new diagnosis and my family dont take care of their health anyway.
I watched my ex go through it and it was brutal. She eventually found a doctor in Florida or something that would actually diagnose her. Still huge problems finding healthcare that even knows what it is. Most of the time it seemed like she was explaining to the doctors she was seeing what it was.
tbh i never got formally diagnosed. personally im lucky enough not to have symptoms that require intervention. i kind of self treated the joint instability through weight lifting, which had a huge positive impact on my quality of life. i didnt even know i had it until earlier this year. at this point a diagnosis isnt worth pursuing, at least for me.
yeah the main thing for me is the excessive pain and wondering if i got a version that fucks with my heart. my dad and his mom both started having heart attacks and other issues in their 40s and that is less than a decade away for me. also i work manual labor so i was hoping to get even a small accomodation but thats not really possible without diagnosis. shit sucks!
yeah i keep forgetting about the possible heart issues… the thing that killed lindsey graham, an aortic direction, is apparently more common for us. my dad has a heart valve going bad, but no heart attacks in the family thankfully.
idk how any of us do manual labor. i always did sports which seemed ok, but any time i did some kind of manual labor i got some kind of overuse injury. got some bad tenis elbow from working in the meat department in a grocery store, and if i walk around too much my knees just fucking throb the rest of the day at least. shit definitely sucks.
![[CW: assumes viewer is transfem] Skin](https://lemmy.blahaj.zone/pictrs/image/7a638b66-322e-46b0-986e-31c5433c48b2.webp){kind=link}
wow the landing page for that site is horrible, 6 paragraphs of not a single word about what the disorder is lol
tldr, “joint hypermobility, skin hyperextensibility, and tissue fragility.”
yeah i coulda picked a better site :P its ehlers danlos, a connective tissue disorder. basically our bodies make messed up collagen. theres a bunch of different kinds and affects all kinds of stuff. joint hypermobility is just the most stereotypical and obvious presentation.
i have soft skin, got a bunch of oddly placed stretch marks during first puberty, have slow bowels (3 or 4 days between dumps is normal for me), slightly stretchy skin, a little joint hypermobility, slow wound healing, my skin turns red super easily, and probably a bunch of other stuff.
how did you get tested? my Dr tried getting me multiple referrals but the long list of requirements just for testing are impossible to reach, like having a direct family member who was diagnosed. even though its a relatively new diagnosis and my family dont take care of their health anyway.
I watched my ex go through it and it was brutal. She eventually found a doctor in Florida or something that would actually diagnose her. Still huge problems finding healthcare that even knows what it is. Most of the time it seemed like she was explaining to the doctors she was seeing what it was.
tbh i never got formally diagnosed. personally im lucky enough not to have symptoms that require intervention. i kind of self treated the joint instability through weight lifting, which had a huge positive impact on my quality of life. i didnt even know i had it until earlier this year. at this point a diagnosis isnt worth pursuing, at least for me.
yeah the main thing for me is the excessive pain and wondering if i got a version that fucks with my heart. my dad and his mom both started having heart attacks and other issues in their 40s and that is less than a decade away for me. also i work manual labor so i was hoping to get even a small accomodation but thats not really possible without diagnosis. shit sucks!
yeah i keep forgetting about the possible heart issues… the thing that killed lindsey graham, an aortic direction, is apparently more common for us. my dad has a heart valve going bad, but no heart attacks in the family thankfully.
idk how any of us do manual labor. i always did sports which seemed ok, but any time i did some kind of manual labor i got some kind of overuse injury. got some bad tenis elbow from working in the meat department in a grocery store, and if i walk around too much my knees just fucking throb the rest of the day at least. shit definitely sucks.
i definitely shouldnt be doing it, but it’s the only thing i can do for what it pays and i have medical expenses. lol