Ehlers Danlos Society EDS quick facts

Ehlers Danlos Society HSD quick facts

A quote by the Zebra Alliance Founder "What you see is a smiling face. What you don't see: Widespread Chronic Pain, Chronic Migraines, Cervical Instability, GI Diseases, Regular Subluxations, Dysautonomia, hunders of Dr's visits... and so much more, none of it good." Just one way we explain EDS to people, because being "bendy" is generally a known quality and far from the only one. (Addition of quote at the end: none is good)

How do you explain EDS or HSD to people?
@ehlersdanlos.bsky.social is SUPER helpful for folks trying to explain EDS or HSD to loved ones. 🩵🦓🩵

linktr.ee/thezebraalli...
#EDS #HSD #ehlersdanlossyndrome #ehlerdanlos #hypermobility #chronicillness #raredisease #chronicpain #invisibleillness

#NORDSummit: Emmelina Sophia Torres, 11, speaking about her #EDS diagnosis Oct. 20, 2025, during @nordrare.bsky.social's 2025 Breakthrough Summit in Washington, D.C.

Image & quote taken by Senior Correspondent, Larry Luxner

#RareDisease #EhlersDanlosSyndrome #EhlerDanlos #NORD #MedSky #RareSky

Unremarkable Music presents: “Life Unfiltered ” Life Unfiltered

Happy Friday.Life Unfiltered is for every chronically ill warrior surviving the chaos with grit, grace, and a bit of dark humour.
#LifeUnfiltered #ChronicIllness #UnremarkableMe #hEDS #EDS #MCAS #POTS #InvisibleIllness #DisabilityMusic #Chiari
#EhlerDanlos

www.unremarkableme.com/post/unremar...

#Eds #EhlerDanlos Month.

… I wasn’t sure this would ever happen for me and I’m grateful to everyone who is able to help make it a reality.
#EhlerDanlos #DisabilityJustice #SaveMedicaid #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome
(8/8)

I think I just subluxed my kneecap. All I'm doing is laying in bed and it suddenly really really hurts. WTH

#EDS #ehlerdanlos #chronicpain #disability #disabled #hEDS

#EDS #EhlerDanlos

#RareIllnessMonth: when those of us who’ve nearly died due to medical gaslighting from the “if you hear hoof sounds think horses not zebras” crowd (ie doctors) come together to compare symptoms and save each other. #hEDS #EhlerDanlos #POTS #dysautonomia #PosturalOrthostaticTachycardiaSyndrome

I’m just beginning my #hEDS journey. Does anyone have any advice for me? Tips for how to care for myself? For education for my family members? For maybe how to interface with my doctors to make them understand my symptoms?

#ehlerdanlos #hypermobility #disability #disabilitycommunity

Taking a mental health day Thursday. Chronic illness gang, what are some of your favorite things to do for mental health days that doesn’t kill the body? #chronicillness #disability #spoonie #disabled #hEDS #POTS #ehlerdanlos

Meme image of Patrick from SpongeBob biting his lower lip with his arms crossed with the ocean in the background captioned “Dislocated thumb take it or leave it”

Me trying to floss my teeth #eds #ehlerdanlos #hypermobile

a drawing of a purple frog flying over an open book by debbie on.com Alt: a drawing of a purple frog flying over an open book by debbie on.com

Ok, #BookSky, hit me with your fiction recs! My NY drivers license came, so my #library card is next week. My post-move body is still beaten up, the #POTS & #EhlerDanlos fully fared; getting lost in fiction is the only thing that can keep me in the cocoon of radical rest w/o my #ADHD flipping out.

Could some of my hypermobile #EhlerDanlos peers please tell me a good way to start building muscle tone without excruciating pain? Feels like a struggle just getting my physio exercises done. #hypermobility

Live Webinar with Susannah Fox, Author of Rebel Health – EDSAwareness.com Join our newest live webinar with Chronic Pain Partners with Susannah Fox, Author of Rebel Health

In case you missed it, here's the recording of our live Q&A with author Susannah Fox Friday Aug 9, 2024, free:

https://buff.ly/3WnwuGu

#EhlerDanlos #EDS #hEDS #HSD #Zebras #NEISVoid #Spoonies #Books

You will hear me banging on about #ehlerdanlos so here is a brief YouTube video about it

youtube.com/watch?v=vyUD...

Sí, la enfermedad rara de la que ha hablado Broncano es una de las mías, sí #EhlerDanlos

Smerte kan oppleves veldig forskjellig selv om den egentlig er den samme. I går høy blå himmel og sol. I dag lave grå skyer og sludd. I går: gå på - smerten er der men «bryr meg ikke». I dag: hvert skritt en pine. Humøret gjør stor forskjell. Merkelig hvordan det fungerer. #EhlerDanlos #artroser