We were lucky to have fellow zebra @karinasturm.bsky.social at the helm of our media team the last seven years.
She's one to follow, as an emerging filmmaker, journalist and disability advocate. Rock on, friend. We owe you! #EDS

Peeling the Diagnostic Onion - is your doctor falling for too many red herrings and missing your #hypermobility?

buff.ly/2QA8nRe

#HSD #EDS #hEDS #EhlersDanlos #pain #MedEd #MedTwitter #Fibromyalgia #fibro #zebras #NEISvoid #autistic #ADHD

It will also be on Apple TV starting May 19th for the win! 🙌✌️

Recommended Books- Living and Coping with EDS and Related Diseases Recommended Books provides a listing or books and other reading resources for those living and coping with EDS, MCAD and other comorbid diseases. A must see and read list of books!

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

😂🙌

Oh congratulations! And you're quite welcome!

Rewatch Day 2 of the UVA EDS Symposium from April 10th, 2026 here:

www.youtube.com/live/IGtre6u...

#EDS #hEDS #HSD #Zebras #MedEd #MedX #NEISvoid

Rewatch Day 1 of the UVA EDS Symposium from April 9th, 2026 here:

www.youtube.com/live/NYfexNL...

#EDS #hEDS #HSD #Zebras #MedEd #MedX #NEISvoid

Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology Abstract. Hypermobile Ehlers–Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study a

Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology October 2025 Griggs, Daylor, Petrucci et al

academic.oup.com/immunohorizo...

#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology

Y'all! This is a great opp to watch for just $3 USD! It's normally $14.99 to stream (they need to recoup costs still).
I saw it and it's very moving and powerful. I bawled! TW: Medical gaslighting, death #EDS #HSD #zebras

Prevalence of various comorbidities in a cohort of individuals with hypermobile Ehlers-Danlos syndrome - Journal of Rare Diseases Journal of Rare Diseases - Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder primarily known to cause abnormalities in the joints and skin. A variety of conditions...

Recognize any of these comorbid conditions?

#ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #Acupuncture #TuiNa #LifestyleSupport 💕 #Wellness

EDS Symposium- Day 1 YouTube video by Vice President for Research at UVA

Day 1 conference recording: m.youtube.com/watch?v=NYfe...

Day 2 conference recording: m.youtube.com/watch?v=IGtr...

Thank you to all #EDS clinicians who participated in the #EDSSymposium by @uvaresearch.bsky.social — you’re giving so much hope to patients, and more clinicians need to listen to you

Stop Victim Blaming. Chronic illness comes from a highly complex mix of genetics, environmental factors, trauma and more. Being chronically ill is not a personal failure.

Stop Victim Blaming!
Enough is Enough!

"Don't try to “fix” us, regardless of your intentions. Believe me, we’re trying, and we’ve heard it all before." - Alana Saltz

linktr.ee/thezebraalliance
#chronicillness #raredisease #invisibleillness #disability #EDS #ehlersdanlossyndrome #mentalhealth #HSD

The first day of last week’s conference, The Big Takeaway was #hEDS and #HSD are the same

It seems super suspect that it’s “just a coincidence” that immediately following that is when clinicians on #MedTwitter #MedSky once again started to spread misinfo opinions about #EDS

There was an Ehlers Danlos conference last week, top #EDS researchers discussed how hypermobile Ehlers Danlos and hypermobility spectrum disorder are the same

The proof is in, the EDS Society will announce by end of 2026

But #MedTwitter #MedSky still fights with patients about this

Resistance to local anesthesia in people with the Ehlers-Danlos Syndromes presenting for dental surgery People with the Ehlers-Danlos Syndromes (EDS), a group of heritable disorders of connective tissue, often report experiencing dental procedure pain despite local anesthetic (LA) use. Clinicians have…

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 #MedTwitter #Dentistry #Dentists

Apologies for my website outage earlier today (Thursday). In other news, I heard they're going to recombine #hEDS and #HSD again.

Unsure exactly what we'll call it. Or if it will stay in the #EDS bin. TBD 12/1/26.

Solve for Both X and Y- Mechanical and Biochemical Approaches Solve for both X and Y- I don't recommend any single particular therapy/remedy for everyone, as clearly no single remedy will work for everyone nor will always be appropriate. But I do recommend some…

Solve for both X and Y when treating #hypermobility and Ehlers-Danlos Syndromes:

ohtwist.com/solve-for-bo...

#EDS #hEDS #HSD #Fibromyalgia #MedEd #FOAMed #MedTwitter #doctors #nurses #NEISvoid

New diagnostic criteria for EDS? Yes, but the story's still unfolding. It's not over by a long shot.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

#Covid worsened overnight.
Woke whole chest inflamed. Bit better now.
Fever again.
3 weeks & still sick w random symptoms getting worse suddenly.
I can’t get better if I’m living on a snack here & there can it?
Reality of #abuse
They refuse to mask even though dr begged them
Must escape!
#LongCovid

Her pay links are all here folks:

Https://linktr.ee/stardrifter42

local - area family putting a little money away to one day blow on single health scare [pic of dad and mom with 2 kids]

@theonion.bsky.social #satire

💐💔💔💔💐 What a mensch. 🫂

Teal blue square graphic about EDS Awareness features a large black and white zebra striped looped awareness ribbon upper left. "EDS Awareness Month" in orange text over that. A graphic of a party horn or favor emitting sparks and stars. A text bubble reads "We have lots of ways to celebrate EDS Awareness!" in teal on white. A white circular logo bottom right reads: "EDS Awareness" and "Ehlers-Danlos Syndromes". Bottom black text reads: www.chronicpainpartners.com

We've got 22 Ways to Celebrate EDS Awareness Month in May! See if one or two suit you:

buff.ly/bhtQQQ2

#EDSAwareness #EDS #hEDS #Hypermobility #HSD #MedEd #Zebras #NEISvoid #Doctors #MedX #Spoonies

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

This really is a never-ending story...

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Thank you @joshnewburymp.bsky.social for leading this debate on the lack of an NHS care pathway for Ehlers Danlos Syndrome patients with Craniocervical Instability.

Everything he describes, Olivia has been through and is still going through.

#EDS #CCI @achronicvoice.com @ehlersdanlos.bsky.social

There is still so much to learn.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Me too, thanks.

Ugh, I'm so sorry. Same for my friend. She's so tired of being floxed! But they have saved her life. 🥺

Oh dear! Hope you stay safe.