Alissa🕸hEDS manager

The instinct of physicians is to avoid bracing & taping so as to encourage patients not to rely on it, but it completely misunderstands the Ehlers-Danlos body. Bracing & taping work as prosthetics that give us the stability which will allow us to strengthen our bodies. #hEDS #EDS

Hello, friends. Happy 2025. Where are you these days? Still here? Other platforms? I’ve not posted much on threads, but I’m there & ig as badelastic. I plan to create more content this year, sharing what I’ve learned thru experience + experiments with hEDS.

Oh yeah I mean… that’s the same with me. It’s actually a fluke that one finally said something about EDS at age 33. After 20 years of weird issues. After diagnosis I couldn’t find any other doctors who knew anything about it so I was like whoa… wild I happened to see that one

Did you see this paper about genes related to #hEDS has been published? They could explain something about POTS & MCAS too, so… pretty interesting. Find it here: researchsquare.com/article/r…

Yes I was thinking that would be a lot of the answers if people answered!!!

Who first suspected you had hEDS? For me, it was a neurologist. I wanted to be examined for carpal tunnel syndrome. She thought what she was seeing in me, & in my history, indicated EDS. I was 33 & had never heard of it. Asking about my history of fainting seemed so random🧐

Just to show the barometric comparison. I’m not used to the roller coaster that is Portland 🥴

Guess I need to be wearing my airplane earplugs all the time here in Portland. I wore them for the first time on the plane and between those and 8-hour Sudafed, I didn’t have the horrific, stabbing ear pain on the descent. I guess I never should have removed them 🫠

Ok I don’t think Portland is the place for me. Not this time of year, anyhow. 😵‍💫 I’ve felt horrible since I got here & now realizing the pressure is super chaotic. With vestibular migraines this is a bit too much up and down for me. Not like this on the CA coast.

I hadn’t thought about it, but like most things EDS I then consider my behavior, I’m like… ahhh, I adapted. The way I drink La Croix without refrigerating it, ask for room temp water without ice, & drink things slowly, not minding they warm up🙃 xitter.cf/kim60laurie/status/178…

My preschool boyfriend’s mom (who we are still family friends with) texted my mom to tell her she’d seen this EDS article in Costco Connection. Last night a woman who my dad worked with at Atari (who we are still family friends with) texted to tell me about it. Word’s out.

I think it’s very cute to have my parents tell me to read this Costco article about #EDS & see they’ve underlined @BluesteinLinda. They don’t know I already know who that is.