Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026) www.chronicpainpartners.com/remembering-... #EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid

Just found out that May is #EDSAwarenessMonth! I have #hEDS & was diagnosed in my late 20s, & have been fighting for my own advocacy. I tell my stories so someone else in similar shoes feels seen when they read them. That's how I started looking for answers. #EDS is the zebra with many stripes.

ART FUNDRAISER FOR MEDICAL RESEARCH Acquire a painting that speaks to you and fund science. 50% of all art sales are donated to The Ehlers-Danlos Society, advancing research into Ehlers-Danlos Syndromes. I live with hEDS. Access to research changed my life. #eds #abstractpainting #contemporaryart

POTS, Sjögren's syndrome, & MCAS... that's a lot. #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HealingPath #HolisticHealth 💕 #Wellness

Yes, you can have both. #BlogPost #AutoimmuneDisease #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #Acupuncture #TuiNa #LifestyleSupport 💕 #Wellness

"There's not a lot we can do for people like you." Like really? I'm unwell and you are a Dr. Bloody get some up to date information and help me. I'm actually paying you!

"If you're not having subluxations and dislocations you're not hypermobile."

I've talked to some people in different organizations and when I tell them one of my main goals is to raise SSI to where I can survive people like scoff at me. "Well, that'll never happen!" I'm like well I love to hear your ideas about how I can actually survive on my own🤔

You doctor said what??~! 😄 Our doctors have all said some doozies over the years as we struggle to get diagnosed. Share your favs in the comments. (No MD names!) #EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #MCAS #POTS #Dysautonomia #zebras #NEISvoid

Horizontal Parenting: 5 Strategies I Used After Surgery as a Disabled Single Mom www.chronicpainpartners.com/horizontal-p... #EDS #hEDS #HSD #EhlersDanlosSyndrome #zebras #Parenting #Disability #POTS #MCAS #CCI

Tomorrow! Don't miss! It's normally $14.99 to stream. 👀

Is #hypermobility just a big red herring? I think so in 2021… ohtwist.com/the-hypermob... #EDS #HSD #hEDS #EhlersDanlos #fibromyalgia #fibro #MedEd #FOAMed #MedTwitter #nurses #doctors #pain #rheumatology #genetics #NEISvoid

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

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

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

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

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

Good explanation of MCAS; less-useful description of how Chinese medicine can treat it (still good, though). #MCAS #EDS #hEDS #POTS #HolisticHealth #SelfCare 💕 #Wellness

#MedicalGaslighting #MEcfs #PostCovid #MCAS #SFN #EDS #PoTS #FQAD

"living with #ChronicIllness..[is] a rollercoaster built by some1 who was clearly drunk on Red Bull & bad intentions. U buckle in. U scream..Sometimes u even laugh because what else can you do?": buff.ly/4rAoSaD via zebrasunderground #ChronicPain #spoonie #disabled #ChronicLife #EDS #diagnosis

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! 🙌✌️

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

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 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

Recognize any of these comorbid conditions? #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #Acupuncture #TuiNa #LifestyleSupport 💕 #Wellness

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! 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 (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 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

@theonion.bsky.social #satire

💐💔💔💔💐 What a mensch. 🫂

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

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

It’s Autism Acceptance Month! Want to participate? Excellent. The best choice is to listen, learn—and lean back to make space for autistic people & autistic-informed resources. We have advice about good (and bad) autism orgs: tinyurl.com/UsefulAutismOrgs #AutismAcceptanceMonth #neurodiversity

💔💔💔

EDS ECHO at The Ehlers-Danlos Society invites applications for the EDS ECHO #HealthcareStudent Program for 2026–2027. This unique program is supported by a generous donation and is offered at no cost to participants: www.ehlers-danlos.com/eds-echo-hea... #EhlersDanlossyndrome #HSD

Very sorry to read of the passing of Dr Rodney Grahame. He was a mensch, and the first to signpost me to HMS then EDS online back in 2007. (I wasn't diagnosed until 2012.) He has literally saved countless lives with his care and advocacy for those with EDS and HSD. All types. RIP good sir. 🥺💔💐✌️