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

Gastrointestinal Autonomic Disorders The gastrointestinal (GI) system and the autonomic nervous system (ANS) have a complex relationship, and disruptions to this relationship can lead to a range of GI disorders, such as autonomic gut dis...

Many w Ehlers-Danlos Syndrome also have Autonomic Nervous System Dysregulation/Dysfunction. This is where the brain-gut connection comes into play.
#gastronomy #gastroenterology #autonomicnervoussystemdysfunction #braingut #neurology #chronicillness #EDS #hEDS #ehlersdanlossyndrome #HSD

So many TZA Community members live w gut disorders, often comorbid, so we really appreciate that there are docs specializing in the neuro and gut connection (treatment).
DYK: GERD, IBS, Functional Dyspepsia, and Gastroparesis are common comorbidities for folks w #EDS and #HSD 🩵🦓🩵
#chronicillness

Infographic promoting the EDS ECHO Healthcare Student Program by the Ehlers-Danlos Society and Project ECHO. The left side lists program features: a monthly core learning program; access to EDS ECHO sessions for drop-in participants, clinicians, allied health professionals, and pediatrics; and access to events and resources including virtual learning events, programs reviewing the 2026 classification criteria, a library of past expert presentations, networking opportunities, and mentoring. The right side shows a world map with global connection points and two healthcare professionals, one examining a patient’s arm, symbolizing global collaboration in healthcare education.

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

A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.

EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors

buff.ly/9sZKVdD

#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky

Avoid Cipro! or Antibiotics From Fluoroquinolone Family if You Have EDS Avoid Cipro!- I'm dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have EDS or not, diagnosed or not) to AVOID all antibiotics from the fluoroquinolone or "quin"…

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile:

ohtwist.com/avoid-cipro

#EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid

Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:

buff.ly/SOlLwKE

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky

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

Jen Kain about her new EDS doc “Exhausted Existence” – EDSAwareness.com Chronic Pain Partners’ Karina Sturm spoke with Jen Kain, the filmmaker behind “Exhausted Existence”. Kain’s documentary delves into the world of Ehlers-Danlos syndrome (EDS) and the lived experiences…

Our interview with Jen Kain about her new EDS doc “Exhausted Existence”:

buff.ly/NOlO8U7

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Documentary #Medicine #Doctors #NEISvoid #Film #MedTwitter #MedSky

Entegrasyona #HSD û Şamê:

Çiya Kobanê bû cîgirê fermandar, lê yekîneyên jinan nayên avakirin

peyamakurd.info/kurmanci/cih...

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

The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025

buff.ly/UPemeY6

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

When Else to Suspect Ehlers-Danlos Syndrome - Oh TWIST When Else to Suspect Ehlers-Danlos Syndrome looks at additional signs and symptoms of the disease and its comorbid diseases.

When Else to Suspect Ehlers-Danlos Syndrome or #HSD
ohtwist.com/when-else-to...

#EDS #HMS #Fibromyalgia #MedEd #Doctors #Spoonies #Hypermobility #Zebras #MedTwitter #NEISvoid #Autistic #Autism #ADHD #MedX #MedSky

The Beighton Score as a measure of generalised joint hypermobility - Rheumatology International The Beighton Score (BS) is a set of manoeuvres in a nine-point scoring system, used as the standard method of assessment for Generalised Joint Hypermobility (GJH). It was originally developed as an…

The Beighton Score as a measure of generalized joint #hypermobility (a review) 2021 by Malek, Reinhold, Pearce buff.ly/2Syq5uV

#EhlersDanlos #EDS #hEDS #HSD #Fibromyalgia #fibro #Meded #FOAMed medicine #NEISvoid #MedTwitter #Doctors #Rheumatology #Genetics #MedSky

Promotional graphic for an EDS Awareness blog post on an orange background with a large photo and text blocks. At the top left, a white rounded rectangle says “New Blog Post.” At top right a circular logo reads “EDS Awareness” and“Ehlers-Danlos Syndromes.” In the central photo, a group of people are walking outdoors on a stone-paved area in front of a large building with tall stone columns and doors. Several people are carrying cardboard boxes. One person is seated in a wheelchair holding a box. Main headline below photo: “Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use”. Body text: “Run Away, Netflix’s latest Harlan Coben adaptation has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user.” At bottom left is a rounded button that says “Read More” with a right-pointing arrow icon. Website text at the bottom :“www.chronicpainpartners.com”

Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use

www.chronicpainpartners.com/netflixs-run...

#EDS #hEDS #HSD #Zebras #Spoonies #Disability #DisCo #MedSky #MedX

The Community Coalition - The Ehlers Danlos Society

"Our goals are worldwide awareness and a better quality of life for all who have #EDS / #HSD. Collaborative international advocacy and research are vital parts of our mission, ensuring we have representation from different organizations and community voices to support and help our global community."

The HMSA | The Hypermobility Syndromes Association The hypermobility syndromes association (HMSA) provides support and information for everyone with a hypermobility syndrome as well as health and social care professionals who support them.

Do you live with a Hypermobility Syndrome?
DYK: There are 6 (known) Types of Hypermobility Syndromes. Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are two.

#hypermobility #hypermobilitysyndrome #HSD #hEDS #EDS #ehlersdanlossyndrome #sticklersyndrome #marfan #osteogenesisimperfecta

Check out my galleries and socials via my website for expanded descriptions!
https://wolfywetfurr.carrd.co/

#horse #hemi #demi #demihuman #hemivector #hsd #hcsvntdracones #ttrpg #game #2023 #rift #riftsilverwater #morsha #wolf

I honestly dealing with the majority of these daily. Life can feel exhausting.

#EDS #edsawareness #hypermobility #hsd #chronicillness

We need your support to keep our media team going thank you! Can you help?

www.chronicpainpartners.com/chronic-pain...

#EDS #EDSAwareness #HSD #Zebras #Spoonies #NEISvoid #Support

We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy…

www.chronicpainpartners.com/in-memory-of...

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #Doctors

ROAD-TO 2026 The International Consortium on Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Facilitated by The Ehlers-Danlos Society The New Global EDS & HSD Diagnostic Criteria is Coming December 1, 2026 The Ehlers-Danlos Society

Major Update Is Coming to EDS & HSD Diagnosis For the first time since 2017, the diagnostic criteria for all types of EDS and HSD are being updated. The countdown begins to publication on December 1, 2026 A new chapter in understanding, diagnosing, and caring for EDS and HSD.

Why This Update Matters The 2017 International Classification of the Ehlers-Danlos Syndromes changed how the world understands EDS and HSD. It has become one of the most widely cited publications in EDS research. Now, new research and global collaboration are shaping the next evolution.

What Will Be Published The updated work will be released in two phases: December 1, 2026 • Updated classification • Diagnostic criteria • Diagnostic pathways March 2027 • Best-practice care guidance • Assessment and management pathways

so excited this is finally happening this year! and i so appreciate the @ehlersdanlos.bsky.social Ehlers-Danlos Society! #EDS #hEDS #HSD

A promotional graphic with a calm lake landscape and text banners at the top and bottom. The main photo shows a person sitting on a rocky shoreline facing a wide, still lake, with tree-lined banks on both sides and early autumn colors (greens with some reds and yellows) under a cloudy sky. Text at the top on a teal background reads: “The Silence After Survival...” A circular logo at the top left reads: “EDS Awareness” and underneath: “Ehlers-Danlos Syndromes” Text at the bottom on a teal background reads: “Guest post by Debbie Hellenbrand” Below that: “www.chronicpainpartners.com"

The Silence After Survival - Guest post by Debbie Hellenbrand on surviving anaphylaxis with caring help for once…

buff.ly/o1idmfK

#EDS #hEDS #HSD #MCAS #masto #zebras #Spoonies #MedX

Gut, ik ben de 'zet je heup terug in zijn groef' truc vergeten en nu zit ie er net naast en zeer te doen. Weet iemand hem nog? Blijf ik er ondertussen een beetje lukraak tegenaan meppen.

#HSD #EDS #Zebra #superflex

A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."

AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

buff.ly/ofignWQ

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support

Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”

Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology

The Chronic Constellation- the Double Trifecta of Co-morbid Conditions The Chronic Constellation- a look at the collection of co-morbid conditions that we see common in the hypermobile and autistic community.

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities:

ohtwist.com/the-chronic-...

#EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid

The Hellenbrand family of four standing together outside next to a military-style vehicle. The family includes a woman with short red hair, wearing glasses and light green clothes, a man in a maroon hoodie and jeans, a boy in a suit and tie with white sneakers, and a girl in a long pink dress with glasses.

“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family in the Netherlands

buff.ly/puQVunj

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #Spoonies #NEISvoid #Medicine #Doctors #Nurses #FII #MedicalKidnap #MedSky #Genetics #Autism #ADHD

A comic about an interaction I had with my physical therapist while getting ready to leave. Dialogue: Me: „oh by the way. Supposedly I have this abdominal hernia. Should I get that fixed?“ PT: „what?“ Me: I don’t know. I’ve had it since I was born? But the doctor back then apparently said it should be fine and if I ever have some sort of surgery they’ll just fix the hernia too while they’re already at it.“ PT looks increasingly more concerned. Me: „but sometimes I get this stabbing pain in my abdomen when I sneeze. Or standup too quickly. But I think that’s just the normal kind of pain sneezing causes.“ PT, yelling: „please see a doctor immediately“

I love telling physical therapists about the weird hole in my stomach lmao #hypermobility #hsd

Overcoming Barriers With Creativity: Watch Lego Oma – EDSAwareness.com Rita Ebel, the focus of the new Chronic Pain Partners (CPP) short film Lego Oma, has found one of the most innovative ways to fix inaccessibility: she builds wheelchair ramps from Lego!

Overcoming Barriers With Creativity: Watch Lego Oma by @KarinaSturm

buff.ly/40tZi3Y

#EDS #HSD #hypermobility #Disability #DisCo #Zebras #Spoonies #Accessibility #Access #NEISvoid #POTS #MCAS #Lego #Legos