The Ehlers-Danlos Society

💬 We'd love to hear about your diagnostic journey. If you feel comfortable sharing, how old were you when you first received a diagnosis, and what diagnosis were you given?

#Ad It's Dysautonomia Awareness Month - Meet our sponsors Supacore! ⁠ ⁠ "Supacore’s Coretech® leggings bring graduated leg compression and targeted abdominal, pelvic, and lower-back support together in one garment. ⁠

"This October, Supacore is highlighting compression as one possible part of a personalized support plan. Find your Supacore fit and explore leg and core support → supacore.com⁠ Use code EDS20 for 20% off." #Dysautonomia #Compression #HypermobileEDS #HSD #Sponsored

supacore.comsupacore.com

youtu.beThe SURPRISING Link Between Mast Cells & the Menstrual Cycle | Doctor ExplainsYouTube video by Doctor Clair

What is the connection between mast cells and the menstrual cycle? Dr. Clair Francomano explains: youtu.be/cBojJpZ0PrI?... #MCAS #MastCells

The Ehlers-Danlos Society reposted

ドリー

@quagga-z.bsky.social

More than 30 years ago, when I was in my 20s, I was diagnosed with what was thought to be EDS at the university hospital. The subtype of EDS is unknown. The doctors told me there was nothing they could do. And then, they sent me on my way.

The Ehlers-Danlos Society@ehlers-danlos.com

💬 We'd love to hear about your diagnostic journey. If you feel comfortable sharing, how old were you when you first received a diagnosis, and what diagnosis were you given?

💬 We'd love to hear about your diagnostic journey. If you feel comfortable sharing, how old were you when you first received a diagnosis, and what diagnosis were you given?

For example, were you diagnosed with a specific type of #EhlersDanlosSyndrome (EDS), a #hypermobilityspectrumdisorder (HSD), or were you initially told you had joint hypermobility without a diagnosis of EDS or HSD? Has your diagnosis changed or become more specific over time?

October is Dysautonomia Awareness Month. ⁠ ⁠ Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.⁠ ⁠

Dysautonomia can occur in people with Ehlers-Danlos syndromes (EDS) & hypermobility spectrum disorders (HSD). Most research on #dysautonomia in #EDS & #HSD has focused on #hypermobileEDS (hEDS) and HSD. Dysautonomia has also been reported in people with other types of EDS, including #cEDS & #vEDS.

ehlers-danlos.comDysautonomia - The Ehlers Danlos Society

Learn more at www.ehlers-danlos.com/dysautonomia/

ehlers-danlos.comI don’t want my diagnosis to be the end of my story - The Ehlers Danlos SocietyIf you had met me years ago, you probably would have seen someone who looked healthy, capable, and full of energy. What you wouldn’t have seen was the constant effort

"Receiving my diagnosis didn’t change who I was, but it changed how I understood myself. Suddenly, years of seemingly unrelated symptoms made sense." www.ehlers-danlos.com/story/disa-k/ #HypermobileEDS #hEDS

youtu.be2023 Treatment: Adaptive Aids & Devices to Help with Symptoms - Mars LombardiYouTube video by The Ehlers-Danlos Society

17 Sept

Do you have a favorite adaptive device or mobility aid?⁠ ⁠ Mars Lombardi talks about dynamic disability & various types of adaptive aids and devices that can be helpful when managing pain and fatigue: youtu.be/03VfEULK65w?... #PainAwarenessMonth #EhlersDanlosSyndromes #HypermobilitySpectrumDisorder

youtu.beDoctor Explains Everything You Need to Know About Chiari MalformationYouTube video by Doctor Clair

14 Sept

September is #ChiariAwarenessMonth. Dr. Clair Francomano explains the symptoms of Chiari Malformation, when to seek neurological evaluation, and resources for support: youtu.be/iCayugcfB6U?... #chiarimalformation #PainAwarenessMonth

youtu.be2025 Symposium - How do I Keep Going When Everything Hurts? - Dr. Sarah Cohen-SolomonYouTube video by The Ehlers-Danlos Society

13 Sept

Dr. Sarah Cohen-Solomon explains how #HSD and #hEDS comorbidities affect day-to-day activities, pacing techniques and approaches, and why it's important for the short and long term, and picking back up after a setback: youtu.be/qOujPfvwplQ?... #PainMonth #HypermobileEDS

youtu.beSmall Fiber Neuropathy in EDS: Symptoms, Causes, and DiagnosisYouTube video by Doctor Clair

11 Sept

Dr. Clair Francomano explains what #SmallFiberNeuropathy is, how it affects the body, and how it is diagnosed. Learn how doctors identify the underlying causes and what treatment options are available, from disease-modifying therapies to symptom management: youtu.be/UGCKkZ9NTts?... #PainMonth

ehlers-danlos.comElliana’s Story: Growing Up with Classical Ehlers-Danlos Syndrome (cEDS) - The Ehlers Danlos SocietyEarly Signs & Diagnosis Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. Her diagnosis was the result of a de novo

9 Sept

"Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. She has also received secondary diagnoses of #POTS, hemiplegic migraines, and primary and secondary #chronicpain." www.ehlers-danlos.com/story/ellian... #PainMonth

2 Sept

Today is the final day to register for the Precision Medicine in Genetically Defined Ehlers-Danlos Syndromes event, taking place September 3-4.⁠ Join this event in Ghent, Belgium, or watch virtually worldwide in over 60 languages.⁠

2 Sept

This global networking event will bring together clinicians, established and early-career scientists, patient representatives, policymakers, and other key stakeholders to advance collective understanding and action in genetically defined types of EDS.⁠

ehlers-danlos.comPrecision Medicine for Genetically Defined Ehlers-Danlos Syndromes - The Ehlers Danlos Society

2 Sept

Health professionals can claim up to 11 Continuing Education credits for live sessions.⁠ Learn more and register today at www.ehlers-danlos.com/precision-me... #EhlersDanlossyndromes #EhlersDanlossyndrome #Research

29 Aug

Dr. Mark Pimentel is the executive director of the MAST Program at Cedars-Sinai. Dr. Pimentel describes specific #gastrointestinal motility disorders associated with some types of #EDS and #HSD, such as #SIBO and gastroparesis, in a video now on our YouTube Channel: youtu.be/F3GKf_WotEw?...

19 Aug

☑️Take The Ehlers-Danlos Society 2026 Community Feedback Survey! ⁠ What matters most to you? We want to hear directly from our community about your experiences and priorities: wkf.ms/4ybTdrb #EhlersDanlossyndromes #HypermobilitySpectrumDisorders

ehlers-danlos.comDr. Clair's Corner - The Ehlers Danlos Society

15 Aug

Join Dr. Clair Francomano, a leading Medical Geneticist, professor, and trusted voice in the #EDS and #HSD community, as she breaks down your most pressing questions and complex medical jargon: www.ehlers-danlos.com/clairs-corner/

11 Aug

📢Applications for #MCAS research funding opportunity close August 14⁠ ⁠ One of the biggest challenges for people living with #MastCellActivationSyndrome (MCAS) is getting an accurate diagnosis. Many experience years of uncertainty, inconsistent testing, and difficulty finding answers. ⁠ ⁠

ehlers-danlos.comehlers-danlos.com

11 Aug

To help address these challenges, The Ehlers-Danlos Society launched a Request for Applications (RFA) with approximately $300,000 USD in anticipated funding: www.ehlers-danlos.com/research-fun... #ResearchFunding #EhlersDanlosSyndromes #HypermobilitySpectrumDisorders

The Ehlers-Danlos Society reposted

Connected Boutique

@connectedboutique.bsky.social

6 Aug

Many people wait years for an EDS diagnosis. This August, Connected Boutique is proud to support @ehlers-danlos.com #StreamForChange campaign to raise awareness, inspire conversations, and help support research, education, and advocacy. Donate tiltify.com/@connected-f... #ehlersdanlos #EDS

The Ehlers-Danlos Society reposted

Connected Boutique

@connectedboutique.bsky.social

7 Aug

This August, Connected Boutique is proud to be part of @ehlers-danlos.com Stream for Change. 💜 We’re using our platform to support the EDS & HSD community, and turn content into meaningful change. Donate or learn more 💜 tiltify.com/@connected-f... #streamforchange #ehlersdanlos #EDS

tiltify.comTiltify - Made for FundraisersWe give you the tools to engage with your donors and raise more for your charity

ehlers-danlos.comPrecision Medicine for Genetically Defined Ehlers-Danlos Syndromes - The Ehlers Danlos Society

4 Aug

Traditional “one-size-fits-all” approaches do not address the complexity experienced by those with the #EhlersDanlossyndromes. Precision medicine—care tailored to genetic, biological, and personal factors—offers hope for more effective management strategies: www.ehlers-danlos.com/precision-me...

We’re turning content into impact with Stream for Change all month! This creator-led fundraising campaign bringing together streamers, gamers, content creators, and online communities to raise awareness and funds for people impacted by EDS and HSD.

Whether you stream on #Twitch, create videos, game, make art, host live content, or have an online community ready to make a difference, we want you to be part of it!

For more information or to learn how you can get involved, reach out to Randi Christodoulou, P2P Fundraising Coordinator, at randi.christodoulou@ehlers-danlos.com #EhlersDanlossyndromes #HypermobilitySpectrumDisorders #Fundraising #TwitchCreators #Streamers #StreamForChange

Some people with #periodontalEDS (pEDS), #hypermobileEDS (hEDS), or #hypermobilityspectrumdisorders (HSD) have trouble producing or sustaining their voice, also known as #dysphonia.⁠

youtu.beEDS, HSD, & the Orofacial Region - Chewing, Swallowing - Christina Semonick - 2024 GLCYouTube video by The Ehlers-Danlos Society

Speech-language pathologist, Christina Semonick, SLPD, CCC-SLP, explains voice concerns in EDS and HSD and how they can be managed: youtu.be/MozfVT-CKkQ?...

youtu.beENT Symptoms and Treatment for EDS and HSD - Gary Wood | English (EN)YouTube video by The Ehlers-Danlos Society

Speech and Language Therapist, Mr. Gary Wood, explains vocal problems seen in these conditions, with helpful visuals and descriptions: youtu.be/mkrq8wP3wNU?... Have you experienced voice issues, and what have you found that has helped?⁠ ⁠

Thank you so much for your support and fundraising for this incredible community!

GodlessSkye@godlessskye.bsky.social

I'm live now! We're gonna be playing Hades with Crowd Control!! We're fundraising for @ehlersdanlos.bsky.social today, and there's sure to be a ton of chaos, because this is also going to be my first time playing Hades and chat is in control 😅💜 www.twitch.tv/godlessskye

The temporomandibular joint (TMJ) connects the lower jaw to the skull. It plays an important role in speaking and chewing.⁠ ⁠ Some people with #classicalEDS, #hypermobileEDS, or #hypermobilityspectrumdisorders may experience problems with this joint or the muscles and ligaments that support it.⁠ ⁠

youtu.beA Physical Therapists Approach to Managing TMJ Pain - Leslie Russek - 2024 GLCYouTube video by The Ehlers-Danlos Society

Professor Leslie Russek shares A Physical Therapist's Approach to Managing TMJ Pain, exploring why TMJ issues occur in these conditions, and offering practical strategies to help manage symptoms and improve jaw function: youtu.be/3Q97naiRTPY?... ⁠

🎥Watch more videos on TMJ in our Ear, Nose, Throat, and Dental YouTube playlist: youtube.com/playlist?lis... ⁠ Have you experienced TMJ issues, and what have you found that's helped?⁠

youtu.beEDS, HSD, & the Orofacial Region - Chewing, Swallowing - Christina Semonick - 2024 GLCYouTube video by The Ehlers-Danlos Society

31 July

🗣️Christina Semonick, SLPD, CCC-SLP, is a speech-language pathologist. Christina explains what communication and swallowing differences are common in #EDS and #HSD, and how Speech and Language therapy may be able to help you. ⁠Watch now: youtu.be/MozfVT-CKkQ?... #Hypermobility

youtu.be2025 Symposium - Is it Just Me, Or Is This A Full Time Job? - Dr. Valerie Iovine RogersYouTube video by The Ehlers-Danlos Society

31 July

Is it just me, or is this a full-time job? Dr. Valerie Iovine Rogers, PT, DPT, explores the physical, emotional, and cognitive demands of navigating complex chronic illness and discusses tools to support you. youtu.be/J5opro2enB8?... #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

28 July

Create. Stream. Change Lives. This August, we’re turning content into impact with Stream for Change, a month-long creator-led fundraising campaign bringing together streamers, gamers, content creators, and online communities to raise awareness and funds for people impacted by EDS and HSD.

28 July

Whether you stream on #Twitch, create videos, game, make art, host live content, or have an online community ready to make a difference, we want you to be part of it!

28 July

23 July

⏰ Last chance to register! The 2026 Global Learning Conference starts tomorrow, July 24, and it's your final opportunity to secure your place. 🔗https://www.ehlers-danlos.com/events/2026-global-learning-conference/ #GLC2026 #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

youtu.beHow Low Dose Naltrexone May Support EDS Pain and InflammationYouTube video by Doctor Clair

13 July

Dr. Clair Francomano explains what LDN is, how it may reduce inflammation and central sensitization, what the current research shows, and important safety considerations. youtu.be/fakxlYoCsrw?... #Pain #LDN

7 July

Vascular Ehlers-Danlos syndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs. vEDS can cause life-threatening complications. Learn more about #vEDS: www.ehlers-danlos.com/veds/ #VascularEDS

ehlers-danlos.comCongratulations Sarah Clark - The Ehlers Danlos SocietyI am proud to share that I was awarded the Research Impact Award at Bournemouth University’s Faculty of Media Science and Technology Postgraduate Research Conference this week, recognizing both my

7 July

Congratulations to Sarah Clark MSc, who has been awarded the 'Research Impact Award' at Bournemouth University's Research Conference. Sarah is completing a part-time MRes exploring how diagnostic delays for #autistic people with #EDS and #HSD can be reduced. www.ehlers-danlos.com/story/sarah-...