Latest posts tagged with #hsd on Bluesky
Okay, my beautiful #Hypermobile peeps...I'd love to connect with more of you. Please reach out if you have #hEDS or #HSD (or you are close to a bendy soul).
What helps you get through the day (esp if you have to sit at a computer all day)?
I live in Canada. I'll share my go-tos in the replies.
Ik was me nooit bewust van het feit dat oestrogeen ook zoveel effect heeft op je bindweefsel.
Vandaar dat ik #Heds #EDS en #HSD ook even tag
Er is gewoon veel te weinig kennis over het vrouwen lichaam en nog zoveel meer mogelijk dan alleen 'je er maar doorheen worstelen' 3 jaar geleden had mijn HA
Have you been looking for information, resources, and support? Give our blog post a read. 🩵🦓🩵
linktr.ee/thezebraalliance #EDS #ehlersdanlossyndrome #ehlersdanlos #hEDS #HSD #hypermobilityspectrumdisorder #hypermobility #chronicillness #EDSresources
A memorial-style poster on a teal background with white text, two white doves holding olive branches, a crying zebra illustration, and a photo of two people standing together at an indoor event. Text on the poster says: EDS Awareness Ehlers-Danlos Syndromes Remembering EDS champion: Dr. Grahame 1932 - 2026 chronicpainpartners.com In the photo, Dr. Grahame, an older light-skinned man with short gray hair and glasses is wearing a light beige jacket over a blue striped shirt. Next to him is Jan Groh, a light-skinned woman with short dark hair and glasses wearing a patterned dress and a scarf, with visible forearm supports/braces and a blue-handled mobility aid. Two small candle illustrations appear near the bottom corners.
Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)
www.chronicpainpartners.com/remembering-...
#EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid
![** youre too young to be [enter symptom] **
Picture of a little boy who looks "crazy" is holding a knife](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:d3oz7ntylr3ufcmjsxijopkz/bafkreig2wnqgaspcwb2f6kgjetpwhow64phxvv4sn3nn4v4ytlaia6tyjq)
** youre too young to be [enter symptom] ** Picture of a little boy who looks "crazy" is holding a knife
Tell us about it 🔪🙈
What are the different "You're too young" comments you have heard?
linktr.ee/thezebraalli...
#chronicillness #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #EDS #HSD #meme #memes #ehlersdanlossyndrome
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
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
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 when treating #hypermobility and Ehlers-Danlos Syndromes:
ohtwist.com/solve-for-bo...
#EDS #hEDS #HSD #Fibromyalgia #MedEd #FOAMed #MedTwitter #doctors #nurses #NEISvoid
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...
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 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 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 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
"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."
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
