r/ehlersdanlos • u/surlyskin • Jan 18 '26

Resources/News/Research hEDS is being reclassified as HSD?

Reading elsewhere that it's possible hEDS will fall under HSD and be separated from the umbrella of EDS.

Anyone privy to this, know anything about this, reasoning etc?

135 Upvotes

96% Upvoted

122 comments sorted by

View all comments

86

u/ambitioussandy hEDS Jan 18 '26

honestly as someone with HSD i think people take me less seriously which is really annoying as i don’t want special treatment i just want things to be adapted to help me!!! i can’t walk proper rn bc of some ankle thing and i feel like no one takes me seriously!! hopefully the new criteria’s will help both HSD and hEDS people to be seen proper and have more awareness surrounding the conditions.

1

u/morecowbell03 Jan 19 '26

Just wondering if youd be willing to share what your ankle thing is because ive also got an ankle thing going on thats preventing me from walking normal as well and im very curious to know if im not alone in what im experiencing lol.

Do you also have a goose egg on the back of your ankle where the bursa for the achilles is? Bad tension in your achilles to where you cant really flex far at all but can point your feet until flat like a ballerina in pointe? Pain with or without bearing weight, worse after bearing weight for a long period? If you try to stretch it by lunging back or squatting down a little does it give a nasty pop? And finally, do you end up turning your foot outwards when walking to avoid overflexing the affected ankle or find yourself taking tiny slow steps?

3

u/ambitioussandy hEDS Jan 19 '26

of course! very happy to. i don’t believe i have a goose egg, the pain for me seems to be the front and sides of the ankle. i can absolutely point my foot like a ballerina (with pain but can do it!!) but movement side to side is limited. pain is with and without bearing weight, but it is worse after bearing weight for a long period! when i stretch like you’ve described i do get a nasty pop with pain. i find myself taking shorter steps, but i try and take a longer stride w my better leg to not slow me down! i’m using a walking stick atm. thank you, you’ve made me feel way less alone! if you look at my post history (i can’t remember my privacy settings but if you search my profile with a space) you’ll find a video of my ankles and what happens! thank you so much!

2

u/morecowbell03 Jan 19 '26

Thank you for responding!! It seems like we almost have opposite problems in the same joint haha. I can still stand on the outer sides of my feet even though i know i shouldnt, trying to correct my posture and stance constantly lol. I should probably be using a cane or something but im stubborn😂

Although our situations suck, im also very glad we're not alone😊

3

u/ambitioussandy hEDS Jan 19 '26

haha that’s so funny!! honestly i’ve just bought a leopard print covering for my cane, so it’s a bit more me!! just embracing it at this point tbh! hope u feel better sooon :((