Latest posts tagged with #HSD on Bluesky
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…
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#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
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#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 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
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#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 by @KarinaSturm
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#EDS #HSD #hypermobility #Disability #DisCo #Zebras #Spoonies #Accessibility #Access #NEISvoid #POTS #MCAS #Lego #Legos
They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations 021 Langhinrichsen-Rohling, Lewis,McCabe et al
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#EDS #HSD #hEDS #MedEd #NEISvoid #MedSky
Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management - our team reviewed and listed the top 25 for you:
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#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #NEISVoid #Spoonies #Zebras #Disability #Patients #Dysautonomia #POTS
Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study 2021 Eccles, Thompson, Themelis et al www.rcpjournals.org/content/clin...
#EDS #fibro #HSD #MECFS #NEISvoid
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
Orange promo poster about scoliosis care and the Schroth Method. Top text: “Introducing the Schroth Method for scoliosis care”. Top-left logo reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. Left side graphics show a large white outline of a curved spine & pelvis illustration, with gray lightning-bolt shapes and two large question marks. Photo on the right shows two adult women in an exercise/therapy room. One (light skin) in black athletic shorts and a black sports bra is barefoot and facing a wooden wall-bar, with arms raised holding the bars; knees are bent in a partial squat. Dr. Campesi (light skin) is behind her, wearing a black long-sleeve top, teal leggings, and black sneakers and appears to be guiding her posture with hands at the upper back and hip area. Small white text reads: “Here we share an expert Q&A on scoliosis care in EDS featuring Caroline Campesi, DPT” Teal text at bottom: “chronicpainpartners.com”
Introducing Schroth Therapy: An Expert Q&A on Scoliosis Care in EDS with Dr. Campesi
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#EDS #HSD #zebras #Scoliosis #Physio #MedSky #MedEd
Neşet Zaza: Peymana #HSD û Şamê li Rojavayê Kurdistanê nehatiye bicihanîn
www.peyamakurd.info/kurmanci/kurdistan/neset-zaza-peymana-hsd-%C3%BB-sam%C3%AA-li-rojavay%C3%AA-kurdistan%C3%AA-nehatiye-bicihanin-92921
Entegrasyona #HSD û Şamê: Enqereyê peyama 'yek artêş' belav Kir
www.peyamakurd.info/kurmanci/cihan/entegrasyona-hsd-%C3%BB-sam%C3%AA-enqerey%C3%AA-peyama-yek-art%C3%AAs-belav-kir-92864
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
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#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky
Awareness poster with teal background. The top left has a white circle logo with the words "EDS Awareness Ehlers Danlos Syndromes." Next to it, bold text says: "Is hEDS just... 'All in your head'? - Study says no!" On the right, there's an emoji of a frustrated face. Below the text on the left, there's an illustration of an angry or stressed woman with fists raised and lines indicating tension around her head, plus a comic-style speech bubble with symbols ("#@%!"). In the center, a megaphone and a close-up photo of a magnifying glass over the word "EVIDENCE". At the bottom, white text reads: "EDS specialist Dr. Pradeep Chopra confirms decades of patients’ lived experiences," with "decades" in italic. Yellow fireworks accent the corners. At the bottom, website: www.chronicpainpartners.com
“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades
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#EDS #Hypermobility #hEDS #EhlersDanlosSyndrome #HSD #Zebras #NEISvoid #Medicine #Doctors #MedEd #Nurses #Psychiatry #MedSky
Mezlûm Ebdî: #HSD dê bi çar tûgayan tev li artêşê bibe
www.peyamakurd.info/kurmanci/kurdistan/mezl%C3%BBm-ebdi-hsd-d%C3%AA-bi-car-t%C3%BBgayan-tev-li-art%C3%AAs%C3%AA-bibe-92774
A square promotional graphic with a dark golden ribbon banner at the top reading "Will you be our champion?", a bronze dollar sign on the upper right, the EDS Awareness logo upper left. "We need your support" over a light blue ganner shownig a set of stick figure drawings cut out under a laundry lign with little tags dangling saying "We need you" in blue, red and green. At bottom: www.chronicpainpartners.com
Will you be our champion? We need your support to keep bringing you the latest and greatest EDS news, thanks!
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#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky #MedTwitter #Medicine #Doctors
Background is orange, and image shows close-up of multiple transparent test tubes, some filled with a blue liquid, with a pipette dispensing liquid into one of the tubes. Text on the image reads: NEW STUDY REVEALS Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome Published in ImmunoHorizons, this additional research provides yet another fresh biological insight into hypermobile Ehlers–Danlos syndrome (hEDS), the most common but least understood form of EDS. HEDS is a multi system condition leading to dozens of comorbid conditions. This study found clear markers for system immune dysregulation in patients with hEDS. Chronic Pain Partners www.chronicpainpartners.com Circular logo top right says: EDS Awareness Ehlers-Danlos Syndromes
New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome - another solid result from the Norris Lab at MUSC:
www.chronicpainpartners.com/new-study-re...
#hEDS #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #Science #Medicine #Research #MedEd #Doctors #Immunology #MCAS #MedSky
#HSD û Hikûmeta Şamê peymanê cîbicî dikin: Hêzên giran vedikişin, asayîş bajaran diparêze
www.peyamakurd.info/kurmanci/kurdistan/hsd-%C3%BB-hik%C3%BBmeta-sam%C3%AA-peyman%C3%AA-cibici-dikin-h%C3%AAz%C3%AAn-giran-vedikisin-asayis-bajaran-dipar%C3%AAze-92711
Money! Was this finally the solution to stop this machine of hate? The anti-democrats thought they had found their god (money), but it would become the source of their downfall. Money bless America!!!
#Trump #ICE #HSD
www.theguardian.com/us-news/2026...
Blue on white infographic reads: "BUILDING YOUR MEDICAL TEAM: A PATIENT CHECKLIST." There are seven tips, each with a green checkmark: Describe your daily life clearly: Tell doctors about your pain, fatigue, GI issues, and daily limitations. Use relatable examples: Compare your challenges to things doctors know (like having the flu). Ask trusted doctors for referrals: “Who would you send your own child to?” is a powerful question. Stay focused in appointments: Bring a short, organized list of issues related only to that doctor’s specialty. Share helpful resources: Provide links to articles or presentations. If they’re not interested, consider moving on. Don’t overlook younger doctors: They’re often eager to learn and open-minded. Use your support network: Ask local groups and friends. There are small illustrations including a thermometer, clipboard, doctor, group of people. "www.chronicpainpartners.com" and in the top right corner is a logo for EDS Awareness (Ehlers-Danlos Syndromes).
Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis
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#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky
#HSD û çekdarên Şamê ji Til Berekê vekişiyan
www.peyamakurd.info/kurmanci/kurdistan/hsd-%C3%BB-cekdar%C3%AAn-sam%C3%AA-ji-til-berek%C3%AA-vekisiyan-92680
Heel lelijk bobbelig rond kussentje
Voorbeeld van nek die niet wordt ondersteund
Ik heb vandaag een (onooglijk 😂) rond kussentje zelf gemaakt met de naaimachine van een oud hemdje en een restje memory foam.
Het is voor mijn hypermobiele lange nek die 's nachts in het luchtledige hangt waardoor ik wakker word van de pijn
#hEDS #HSD
Digital pink, yellow, and orange graphics. 2026 State of the Body (or, WTF is Wrong with Crash?) Right-pointing arrow
![Digital pink, yellow, and orange graphic.
First up, I live in Minneapolis
My immigrant and BIPOC neighbors are still being terrorized.
Operation Metro Surge has also prevented me from seeking medical care.
visit StandWithMinnesota [dot] com to contribute directly to mutual aid
Right pointing arrow.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:5hoke2cjdtofovlp77ltgpn3/bafkreifaplaoxpcggqsmc4y5o5hdsq7z6goyahe4r5c45vibzbfgcy6h3q)
Digital pink, yellow, and orange graphic. First up, I live in Minneapolis My immigrant and BIPOC neighbors are still being terrorized. Operation Metro Surge has also prevented me from seeking medical care. visit StandWithMinnesota [dot] com to contribute directly to mutual aid Right pointing arrow.
Digital pink, yellow, and orange graphic. Why write a whole post about your health & disability? (01) To record my experiences to educate and inform to advocate for change & accessibility
Digital pink, yellow, and orange graphic. Why write a whole post about your health & disability (02) To have something to give to people when they ask what's wrong with me, regardless of the tone of the question
2026 State of the Body, or, WTF is wrong with Crash?
#MEcfs #HSD #cPTSD #ChronicIllness #MaskUp #DisabilityJustice
