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.
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…
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🧐
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.
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 🫠
Alissa🕸hEDS manager retweeted
Awww. @badelastic that’s so sweet!! I’m thrilled and grateful that #Costco included this story in their popular magazine, Costco Connection! The more people knowledgeable about these conditions, the better! 🧬🎧🦓
#BendyBodiesPodcast #podcast #EhlersDanlos
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.
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.
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 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🙃
teapaw.org/kim60laurie/status/178…
MDs keep repeating this is a common hernia. But it’s more common to those assigned female at birth who are heavy in the middle, have been pregnant or had abdominal surgery.
I’m “thin”(their words), never pregnant, no surgery.
but my middle is collapsing due to SRS… due to #hEDS
#hEDS might not be rare but physicians who know enough about it to provide appropriate care certainly are!
It’s me! It’s us! #hEDS
So fun to have doctors who do not know enough about your condition to provide appropriate care but also do not want you to inform them about your condition to the point that they might be able to. 🥳
Hypermobility in #hEDS is a disability.
Your tissue failing to safely support you and your movements, is a disability. The reduced stability, rigidity, resistance & restraint in your body, is a disability.
Yes, I didn’t give it to anyone in the house when I got it. The next year they didn’t give it to me when they had it. We mostly stuck to our bedrooms and all wore masks if out of them.
Wearing a mask and not sharing a bedroom reduces risk by 78% in household transmission.😷 🧵
nature.com/articles/s43856-0…
I like to kind of sneak this point about disability aids up on people by talking about eyeglasses. Think of all of the designer brands who are getting involved in vision disability aids? Um, where is my black & gold CHANEL cervical collar? And then where are the knockoffs?
Interested to listen!
New Episode! "84. Slipping Rib Surgery in EDS with Adam Hansen, MD"
In this episode, join thoracic surgeon and chest wall reconstruction expert Adam Hansen, MD, to learn about slipping rib surgery i…
Player links & show notes: bendybodiespodcast.com/84-sl…
I have a rib that is… for now… permanently out. It impacts my gait & other movement (when I push it back in & hold it, my chain connects instead of collapses & my movement flows). Docs said “that’s not a thing.” Felt it. Then said “😳ok but what can ya do? 🤷♀️No clue.” #heds
I think an issue with my rib & why it’s just not aligned anymore has to do not only with #hEDS disability/tissue with reduced rigidity leading to it moving more easily but *scoliosis*. My scoliosis, & potentially *your* scoliosis could be pushing your ribs out of line. 😞