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ohtwist.bsky.social
Oh That's Why I'm So Tired - Ehlers-Danlos syndromes blogger and medical educator, co-author EDS Toolkit for Doctors 2018, book on EDS and autism coming 2025 (tbd) (toes crossed) https://ohtwist.com
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Resistance to local anesthesia (seen) in people with the Ehlers-Danlos Syndromes presenting for dental surgery 2019 Schubart, Schaefer, Janicki et al buff.ly/2wEJ4co #EDS #hEDS #Hypermobility #HSD #fibro #Fibromyalgia #NEISvoid #MedSky #Dentistry #Dentists

submitted 1 day ago • 2 comments

Dental Freezing (Numbing) Formula that works great for many patients with CTDs: 1/2 mepiva w/out epi, 1 art w/epi 1:100,000 “art” stands for “articaine”. #EDS #hypermobility #HSD #NEISvoid #Dentists #autistic #Dentistry

submitted 1 day ago • 0 comments

The DOE has quietly put forth a proposition to eliminate accessibility requirements from public buildings. It violates the ADA and is another example of the rampant disregard for disabled lives in this regime. One day left to have your say! Demand accessibility for all!

submitted 1 day ago • 8 comments

Ugh! You guys! Jessi desperately needs some car repair now to stay safe in her van! While still trying to get to and through double spinal fusion surgery June 24th!! Please help! 🙏#EDS #hEDS #HSD #Hypermobility #zebras #NEISvoid #spoonies

submitted 7 days ago • 0 comments

Each time I attend a patient with #EDS I learn something new. Useful, unofficial resource. #EhlersDanlos

submitted 5 days ago • 2 comments

Less than two weeks now! Please help her get housed pre-op, TY!!

submitted 5 days ago • 0 comments

Patients with #EhlersDanlos or #Hypermobility Spectrum Disorders can spring CSF leaks anywhere along their dura and from noses & ears among many other things... ohtwist.com/about-eds/co... #EDS #HSD #meded #FOAMed #doctors #nurses #medstudents #MedTwitter #NEISvoid

submitted 9 days ago • 0 comments

Ugh! You guys! Jessi desperately needs some car repair now to stay safe in her van! While still trying to get to and through double spinal fusion surgery June 24th!! Please help! 🙏#EDS #hEDS #HSD #Hypermobility #zebras #NEISvoid #spoonies

submitted 7 days ago • 0 comments

We’re finding #autism and #ADHD to be common in #hypermobile and Ehlers-Danlos families: ohtwist.com/about-eds/wh... #EDS #ASD #meded #FOAMed #SPD #zebras #autistic #spoonies #EhlersDanlos #ASC #neurodiversity #NEISvoid

submitted 9 days ago • 0 comments

Links in second post. Click through. They all work. I've followed and donated to them all for a year. She is very real. And in tremendous pain. Please help! TY!

submitted 10 days ago • 1 comment

Patients with #EhlersDanlos or #Hypermobility Spectrum Disorders can spring CSF leaks anywhere along their dura and from noses & ears among many other things... ohtwist.com/about-eds/co... #EDS #HSD #meded #FOAMed #doctors #nurses #medstudents #MedTwitter #NEISvoid

submitted 9 days ago • 0 comments

We’re finding #autism and #ADHD to be common in #hypermobile and Ehlers-Danlos families: ohtwist.com/about-eds/wh... #EDS #ASD #meded #FOAMed #SPD #zebras #autistic #spoonies #EhlersDanlos #ASC #neurodiversity #NEISvoid

submitted 9 days ago • 0 comments

Y'all, Jessi is starting to lose hope as we close in on barely two weeks until her major DOUBLE spinal fusion surgery June 24th. She's stuck living in her van while her spine is crumbling! Please help her with immediate needs (PP, V, CA) and housing (GFM) thanks! 💔🙏💔 #EDS #HSD #NEISvoid #zebras

submitted 10 days ago • 1 comment

June is Lipedema Awareness Month, another not uncommon co-occurring condition with #EDS and #HSD. It's a painful adipose tissue disease that lends to unavoidable fat and weight gain, especially in the lower body. Lipomas too. Mostly in women. #Lipedema #MedSky #NEISvoid #diet morethanfat.com

submitted 15 days ago • 0 comments

Happy 5th day of pride month…..

submitted 11 days ago • 2 comments

Potential biomarker found for hypermobile type #EDS and #HSD by Italian research team September 2024: buff.ly/3Xwkrrf #hEDS #Hypermobility #NEISvoid #Zebras #Diagnostics #Genetics #MedEd #Doctors #Spoonies #MedSky

submitted 17 days ago • 0 comments

I'm increasingly convinced she has Osteogenesis Imperfecta now but nevermind. Jessi is barely hanging on in her van on a crappy phone while muggle sick with a kidney infection too. 😰 All on top of a crumbling spine. 😣 Please help her! 🙏 #EDS #hEDS #HSD #NEISvoid #zebras

submitted 14 days ago • 0 comments

June is Lipedema Awareness Month, another not uncommon co-occurring condition with #EDS and #HSD. It's a painful adipose tissue disease that lends to unavoidable fat and weight gain, especially in the lower body. Lipomas too. Mostly in women. #Lipedema #MedSky #NEISvoid #diet morethanfat.com

submitted 15 days ago • 0 comments

Day 29 of #EDS & #HSD Awareness Month: Celebrate the Community 👉 Tag a fellow zebra who inspires you - human or organization: Share with us in the comments 🧡 🦓 🧡 @ehlersdanlos.bsky.social‬ inspired and inspires The Zebra Alliance Community 🩵 🦓 🩵 #ehlersdanlossyndrome #hypermobilityspectrumdisorder

submitted 17 days ago • 0 comments

Hi, I’m God. Healthcare is a human right. Love, God

submitted 17 days ago • 200 comments

Potential biomarker found for hypermobile type #EDS and #HSD by Italian research team September 2024: buff.ly/3Xwkrrf #hEDS #Hypermobility #NEISvoid #Zebras #Diagnostics #Genetics #MedEd #Doctors #Spoonies #MedSky

submitted 17 days ago • 0 comments

She's stuck living in her van with a failing spinal fusion! Please help her get housed stat, thanks!! Just $1100 clears her credit balance to open the housing door! She has SSI for rent. TY!! #EDS #hEDS #HSD #NEISvoid #MutualAid 🙏

submitted 19 days ago • 1 comment

So I tried to catch the MUSC MIND EDS day yesterday but was pulled away. Anyone know if there will be replays? It was that it? I'll be so sad if not! #EDS

submitted 17 days ago • 0 comments

Y'all, Jessi is really struggling. The last hotel was a moldy bust. Her spine is crumbling. And now she has another kidney infection and no food or water!! Please help any amount you can. Please use her PP or Venmo thanks! ✌️💔🙏💔✌️ linktr.ee/Stardrifter42 Duck butt shown for attention #EDS

submitted 19 days ago • 1 comment

She's stuck living in her van with a failing spinal fusion! Please help her get housed stat, thanks!! Just $1100 clears her credit balance to open the housing door! She has SSI for rent. TY!! #EDS #hEDS #HSD #NEISvoid #MutualAid 🙏

submitted 19 days ago • 1 comment

submitted 20 days ago • 465 comments

My list of some recommended books on #EhlersDanlos Syndromes & #Hypermobility: ohtwist.com/eds-resource... #EDS #HSD #fibromyalgia #MedEd #doctors #nurses #patients #medicine #EhlersDanlos #SED #NEISvoid #MedSky

submitted 34 days ago • 0 comments

Y'all, this first house lead fell through, but she's still scheduled for surgery June 24th! Please help get her housed before then! We're so close! TY! #EDS linktr.ee/Stardrifter42

submitted 26 days ago • 0 comments

But I’m a horse! How the newly recognized #hypermobility Spectrum Disorders are not rare, just rarely diagnosed: ohtwist.com/but-im-a-hor... #HSD #EDS #EhlersDanlos #hEDS #MedEd #FOAMed #MedSky #doctors #nurses #NEISvoid

submitted 34 days ago • 1 comment

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile: ohtwist.com/avoid-cipro #EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedSky #MedEd #FOAMed #NEISvoid

submitted 34 days ago • 0 comments

"The researchers demonstrated a correlation between implicit negative associations and lower endorsement of inclusive social policies, welfare provisions, and accessibility initiatives.... unconscious biases may undermine advocacy efforts and societal commitments to equality. " #Disability #CripCoop

submitted 23 days ago • 0 comments

#EDS #hEDS #HSD #NEISvoid #zebras #spoonies #MA

submitted 26 days ago • 0 comments

Uh... I take both!

submitted 26 days ago • 1 comment

Thx @shibakaz.bsky.social for the useful shareable info👏 Lack of #EDS awareness, esp in health service, means my bff B is neglected/endangered by all services; vulnerable to abuse/violence; disabled; homeless; fighting for her life. Pls #HelpMeHelpB www.gofundme.com/f/helpmehelpb #EDSAwarenessMonth

submitted 28 days ago • 0 comments

Y'all, this first house lead fell through, but she's still scheduled for surgery June 24th! Please help get her housed before then! We're so close! TY! #EDS linktr.ee/Stardrifter42

submitted 26 days ago • 0 comments

Seriously. Doctors want to fuse her whole spine but can only go a bit at a time. She's an incredible artist stuck living in mass pain in her van with a failing spine! Please just share if nothing else! Thank you!! Let's do this!!

submitted 30 days ago • 1 comment

Y'all, Jessi has a lead on an affordable rental house TODAY but just needs $1550 deposit!! Her lumbar fusion is failing and she's scheduled for DOUBLE spinal surgery June 24th while homeless!! Please help her get housed, thanks! #EDS #hEDS #HSD #NEISvoid #zebras

submitted 30 days ago • 1 comment

Hear what EDSers think about the current 2017 Diagnostic criteria that won't be addressed until later 2026: buff.ly/RKGrs5m #EDS #hEDS #HSD #Hypermobility #Medicine #Doctors #Genetics #Zebras #MedSky #FOAMed

submitted 34 days ago • 0 comments

My list of some recommended books on #EhlersDanlos Syndromes & #Hypermobility: ohtwist.com/eds-resource... #EDS #HSD #fibromyalgia #MedEd #doctors #nurses #patients #medicine #EhlersDanlos #SED #NEISvoid #MedSky

submitted 34 days ago • 0 comments