#Ad The Ehlers-Danlos Society thanks RTHM Health for sponsoring #ISS2025! [Thread] ⁠ "Living with Long COVID, ME/CFS, or EDS often means years of searching for answers and what to try next. Watch to hear Eliana’s experience with RTHM’s new intelligence platform and what it revealed for her.⁠

October is #Dysautonomia Awareness Month. Many people with #EhlersDanlossyndrome (EDS) or #hypermobilityspectrumdisorder (HSD) also have a type of dysautonomia. People with #EDS & #HSD most commonly have a form of orthostatic intolerance. Learn more: www.ehlers-danlos.com/dysautonomia/ ⁠

Prolotherapy is a treatment that involves injecting an irritant solution (often sugar-based) into ligaments, tendons, or joints. [Thread] youtu.be/sigAJALk6vE?... ⁠

#VascularEhlersDanlossyndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs. youtu.be/hL2uWv1z7vc?... #Healthcare #HealthProfessionals #Vascular #vEDS

Our article examining the extent to which people with #hypermobility are at risk of Long COVID was just published in BMJ Public Health, an open access journal. bmjpublichealth.bmj.com/content/3/2/...

#Ad The Ehlers-Danlos Society is delighted to welcome Zevra Therapeutics as Sponsors of the 2025 International Scientific Symposium! ⁠

🌎It’s Day 2 of the 2025 International Scientific Symposium here in Toronto, Canada! Today, sessions will cover classical EDS (cEDS), vascular EDS (vEDS), and research into rarer types of EDS.

New research into #hypermobileEDS! www.ehlers-danlos.com/exciting-new...

#Ad The Ehlers-Danlos Society is delighted to welcome Body Braid as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]

New from Dr. Clair's Corner! youtu.be/ovMSTnDRcvQ?... #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals

#Ad The Ehlers-Danlos Society is delighted to welcome Guava Health as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]

Tomorrow, September 17th starts for healthcare professionals. Sunday the 21st Community Day is open to all. You can attend virtually too. #EDS #HSD #hEDS #zebras #NEISvoid

#Ad The Ehlers-Danlos Society is delighted to welcome @wearlumia.bsky.social as Sponsors of the 2025 International Scientific Symposium, September 17-21! [Thread]

Less than 1 week to go until the 2025 International Scientific Symposium! An event for health professionals to hear the latest research in EDS and HSD, & September 21 will welcome the community and caregivers. Join us in #Toronto, Canada, or virtually worldwide: www.ehlers-danlos.com/events/inter...

Pleased to see this getting discussed. There is a total lack of support in the UK for people with Ehlers Danlos Syndrome suffering Craniocervical Instability. We've been on this awful journey & fundraised for major neurosurgery in Spain, it saved Liv's life when NHS wouldn't help. #EDS #CCI

#Ad The Ehlers-Danlos Society is delighted to welcome @rthm.bsky.social as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread] ⁠

Pain is one of the most common struggles for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). ⁠ #EDS and #HSD can cause both acute and chronic pain. ⁠ There are many ways to manage #pain: www.ehlers-danlos.com/september-is... #PainMonth

Our Let’s Chat: Parents group is for parents with EDS or HSD or parents of children with #EDS or #HSD. Join other parents tomorrow on Zoom and meet others who understand. ⁠ ⁠ Date: Wednesday, September 3 Time: 12:00 pm ET forms.monday.com/forms/287901...

Dr. Clair Francomano talks about venous insufficiency in this informative video, explaining how weakened vein structure can lead to blood pooling, dizziness, and brain fog. youtu.be/fhPhuiIEVCI?...

The Ehlers-Danlos Society is delighted to announce new members of its CORE Network of Excellence Program, created to address the deep need for improved access to care globally for #EhlersDanlosSyndrome (EDS) and #hypermobilityspectrumdisorder (HSD). www.ehlers-danlos.com/new-core-net... #Healthcare

The DecodeME study, the largest genetic investigation of #ME/CFS to date, has revealed initial findings that may offer clues about how the condition develops. www.ehlers-danlos.com/genetic-stud...

Health Professionals - The Countdown to the 2025 International Scientific Symposium "Pathways to Progress: A Decade of Insights and Innovations in EDS & HSD⁠" Begins. Early bird pricing ends July 31, save $100!⁠ www.ehlers-danlos.com/events/inter...

The Ehlers-Danlos Society's global mission for EDS and HSD could receive a £2,000 boost with your help! 🧬👩🏽‍⚕️ 🦓 Nominate The Ehlers-Danlos Society in the Movement For Good Awards — You can nominate from anywhere in the world. Click here to nominate: movementforgood.com/index.php?cn...

💜 It’s Disability Pride Month! 💜 July is Disability Pride Month, a time to celebrate the EDS and HSD community and uplift disabled voices around the world.

June is #ScoliosisAwarenessMonth. Did you know that #scoliosis is a common feature in several types of #EhlersDanlossyndrome (EDS)? Learn more: www.ehlers-danlos.com/scoliosis-aw...

Let's talk connective tissue! Dr. Clair explains how collagen and the extracellular matrix play a key role in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). A clear, concise overview. youtu.be/w2BIlqVqSgc?...

Dr. Clair Francomano explains 3 lesser-known neurological complications linked to #EhlersDanlosSyndrome (EDS): #Craniocervicalsyndrome, #tetheredcord, and #smallfiberneuropathy. youtu.be/K11wNtPn128?...

Going to be attempting to raise more money for @ehlersdanlos.bsky.social tonight after work. It’s the final day of the fundraising streams so let’s make it special! Stream will be over on Twitch.tv/jplovecraft at around 9pm or 10pm est. All depends how quick I can get out.

Annie Schindel co-wrote Chappell Roan‘s anthem “Red Wine Supernova” and talks to @variety.com about being diagnosed with #EhlersDanlosSyndrome and songwriting. variety.com/2025/music/n...

Dysautonomia, also known as autonomic dysfunction, is a group of disorders that affect the autonomic nervous system (ANS). Many people with #EhlersDanlosSyndrome or #HypermobilitySpectrumDisorder also have a type of #Dysautonomia: www.ehlers-danlos.com/dysautonomia/

Been spinning a wheel for games to play this month while raising money for @ehlersdanlos.bsky.social over on twitch.tv/jplovecraft. It’s Day 13 tonight, and our 13th game is 13 Sentinels: Aegis Rim. What a coincidence!

Day 22 of #EDS & #HSD Awareness Month: My Dream Medical Appointment 👉 If you could design the perfect visit, what would it include? Maybe some doctors will see this thread and dreams will come true. 😉 Resources: @ehlersdanlos.bsky.social #ehlersdanlossyndrome #hEDS #raredisease #chronicillness

On behalf of @ehlersdanlos.bsky.social we thank you for your support! ⭐ The kindness of the communities was amazing! Our Wear Your Stripes Streamers worked hard to uplift and amplify this cause! 💖 Thank you to everyone who joined and stay tuned for more info on the Stardew Cookbook giveaway! 💫

Exciting news - I am launching a YouTube Channel. Please subscribe and spread the word far and wide youtube.com/@bendybraindrj…#hypermobiltyt#edsd#neurodivergencec#fibromyalgiai#mecfsf#anxietyt#allthethingsgs

Join the #REDS4VEDS campaign today Friday, May 16, and help to raise awareness of vascular Ehlers-Danlos syndrome (vEDS).⁠ ⁠ ⁠ To take part simply:⁠ ⁠ 🔴Wear something red⁠ ⁠ 🤳 Post a picture on social media with the hashtag #REDS4VEDS⁠ ⁠

Tell Your Healthcare Team About EDS ECHO! This May, take one simple but powerful step to improve awareness, reduce diagnosis time, and enhance care for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)—

🌟 Did you know there are many types of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), each with their own distinct signs and symptoms?

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Learn more about symptoms, diagnosis, and management in this video: youtu.be/93u8edKfbMQ?... #HSD #Hypermobility #HypermobilitySpectrumDisorder

Dr. Clair Francomano provides an overview of the Ehlers-Danlos syndromes (EDS), discussing symptoms, impact on daily life, and effective approaches for management and care. Watch now: youtu.be/9I1kHUvu_0A?... #EhlersDanlosSyndrome #EDS #Healthcare

I invite my broader patient advocacy community and beyond to follow along this month as I and many other zebras share more about EDS! If you have questions you'd like me to address during this awareness month, feel free to DM🦓 end/x @ehlersdanlos.bsky.social

MAY IS EDS & HSD AWARENESS MONTH 🩵🧡🦓🧡🩵 As many of you know, research funding is being stripped away, so orgs like @ehlersdanlos.bsky.social need our support more than ever! Help us help them reach their $100,000.00 Fundraising Goal 🙏 Learn More: www.ehlers-danlos.com #EDS #HSD #ehlersdanlossyndrome

May is EDS (ehlersdanlos) and HSD (Hypermobility Spectrum Disorder) month — @ehlersdanlos.bsky.social has provided a list of 31 topics to cover for the entire month of May! I’m going to try my best to take part in ever day I can and it will all be documented here in this thread! 🧡

This is FANTASTIC!!! @ehlersdanlos.bsky.social you guys are amazing: Access for more folks = 👌 🤗🦓🩵 DYK: The Ehlers-Danlos Society is our top recommended resource for folks with (loved ones with) EDS. We highly recommend them for info, education, resources, and research (news).

🌐Website Translation in 22 Languages! We have now introduced a new translation tool on our website, allowing you to view content instantly in your preferred language. [Thread]

We’re thrilled to welcome The Alinker as sponsor of The Ehlers-Danlos Society Walk and Roll Challenge! "The Alinker walking bike is designed for people who want to stay active, mobile, and independent—especially those who typically need a mobility aid. [Thread]

It’s Autism acceptance & as the foremost charity with Patron @bendybrain.bsky.social & Chair @jgjanegreenmbe.bsky.social we’re proud to share our pioneering advocacy. Watch the @ehlersdanlos.bsky.social GLC keynote closing conference here: www.youtube.com/watch?v=McKt... #AutismAcceptance #Autistic

It's #WorldAutismAwarenessDay. A 2025 systematic review and meta-analysis found that approximately 31% of autistic individuals exhibit joint hypermobility, and about 39% of people with #EhlersDanlosSyndrome or HSD meet diagnostic criteria for #autism. www.ehlers-danlos.com/autism-accep...

Our Chair and Founder, @jgjanegreenmbe.bsky.social, was the final keynote speaker at @ehlersdanlos.bsky.social 2023 Conference in Dublin, now with 52K views! 👉Watch here: youtu.be/McKtL8-Knb8?si…#Neurodivergencec#Hypermobilityt#HSDS#EDSDS