The Ehlers-Danlos Society
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society
@ehlersdanlos.bsky.social
1.5K followers 84 following 180 posts
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) ehlers-danlos.com
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The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 3d
💜December 2nd is Giving Tuesday, & your gifts will have double the impact!

We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!
“Promotional graphic for The Ehlers-Danlos Society’s Giving Tuesday campaign. Text reads: ‘Giving Tuesday – December 2, 2025 – Two Weeks To Go!’ A stylized zebra heart replaces the ‘V’ in ‘Giving.’ On the right, a smiling woman holds a young child who has their arms around her. The background is white and purple with soft decorative shapes.”
ehlersdanlos.bsky.social
💜December 2nd is Giving Tuesday, & your gifts will have double the impact!

We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!
“Promotional graphic for The Ehlers-Danlos Society’s Giving Tuesday campaign. Text reads: ‘Giving Tuesday – December 2, 2025 – Two Weeks To Go!’ A stylized zebra heart replaces the ‘V’ in ‘Giving.’ On the right, a smiling woman holds a young child who has their arms around her. The background is white and purple with soft decorative shapes.”
November 20, 2025 at 8:11 PM
Reposted by The Ehlers-Danlos Society
indiespace.com
On @indiewire.com, Courtney Marsh talks about releasing Where Did the Adults Go? for free on YouTube after 40+ film festival and distributor rejections – also ensuring that it reached the communities it represents by partnering with @ehlersdanlos.bsky.social.
#indie #indiefilm #indiefilmmaker #film
Why My Oscar Follow-Up Is Premiering on YouTube
After an Oscar nom for short "Chau, Beyond the Lines," filmmaker Courtney Marsh aimed for feature debut. But what about getting it in front of people?
www.indiewire.com
November 19, 2025 at 11:02 PM
ehlersdanlos.bsky.social
Today's video from Doctor Clair Francomano explains the key features of classical Ehlers-Danlos syndrome, including joint hypermobility, skin hyperextensibility (stretchy skin), and skin fragility. youtu.be/vohXwTqfRUU?...

#cEDS #ClassicalEDS #EhlersDanlosSyndrome #HealthProfessionals #Medicine
What You Need to Know About Classical EDS
YouTube video by Doctor Clair
youtu.be
November 7, 2025 at 2:35 PM
Reposted by The Ehlers-Danlos Society
thezebraalliance.bsky.social
Do you have a loved one who lives with EDS + are their carer? Give this article from @ehlersdanlos.bsky.social a read 📖
Caregivers, please make sure to take care of yourself 🩵🦓🩵
#EDS #hEDS #ehlersdanlossyndrome #ehlersdanlos #chronicillness
Caring for Someone with EDS or HSD - The Ehlers Danlos Society
www.ehlers-danlos.com
November 6, 2025 at 2:59 AM
Reposted by The Ehlers-Danlos Society
prodigalhoosier.medsky.social
🤘 Meeting cool people with EDS/hEDS in Michigan and am super excited to start making connections with people in my new state!
November 1, 2025 at 4:13 PM
Reposted by The Ehlers-Danlos Society
prodigalhoosier.medsky.social
You ARE worth more than you do.
Your worth is INNATE and NOT connected to your productivity!

#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
ehlersdanlos.bsky.social The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 22d
🧠💗Today is the EDS ECHO Summit: Mental Health virtual event!

🌎We are joined by 431 attendees, including 228 healthcare professionals, representing 25 countries [Thread]
EDS ECHO Summit on Mental Health recordings. Virtual conference for community members and healthcare professionals. Includes Ehlers-Danlos Society ECHO and Project ECHO logos.
November 1, 2025 at 3:31 PM
Reposted by The Ehlers-Danlos Society
prodigalhoosier.medsky.social
If you can jump into this event today it has been FANTASTIC. I highly recommend it.
ehlersdanlos.bsky.social The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 22d
🎫There is still time to join today's event! We also have a ticket option to purchase the event recordings, which will be sent to ticket holders tomorrow.

You can learn more here about ticket options here: www.ehlers-danlos.com/eds-echo-sum...
EDS ECHO Summit: Mental Health - The Ehlers Danlos Society
www.ehlers-danlos.com
November 1, 2025 at 3:31 PM
ehlersdanlos.bsky.social
🧠💗Today is the EDS ECHO Summit: Mental Health virtual event!

🌎We are joined by 431 attendees, including 228 healthcare professionals, representing 25 countries [Thread]
EDS ECHO Summit on Mental Health recordings. Virtual conference for community members and healthcare professionals. Includes Ehlers-Danlos Society ECHO and Project ECHO logos.
November 1, 2025 at 1:23 PM
ehlersdanlos.bsky.social
The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study continues to advance understanding of #hypermobileEhlersDanlossyndrome ( #hEDS) and #hypermobilityspectrumdisorder ( #HSD). Read the latest update & key findings! www.ehlers-danlos.com/hedge-study-...
Hedge Study Update - The Ehlers Danlos Society
www.ehlers-danlos.com
October 29, 2025 at 4:26 PM
Reposted by The Ehlers-Danlos Society
sedsconnective.org
Just over 1 week to go until the @ehlersdanlos.bsky.social Society EDS ECHO Summit: Mental Health!
With our chair @jgjanegreenmbe.bsky.social
⁠
🎟️ Register now (or apply for a scholarship) at www.ehlers-danlos.com/eds-echo-sum... “
October 24, 2025 at 2:28 PM
ehlersdanlos.bsky.social
Francie Fitzgerald speaks on the experience of living with #hypermobileEhlersDanlossyndrome (hEDS) and #POTS for the past 13 years; highlighting the diagnostic odyssey and the arduous process of finding effective treatments. youtu.be/Qa-dfd2Nl2k?...
2023 Living with hEDS and HSD: POTS - Francie Fitzgerald
YouTube video by The Ehlers-Danlos Society
youtu.be
October 25, 2025 at 1:30 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Splints By Evabelle as Sponsors of the EDS ECHO Summit: Mental Health, happening on November 1! ⁠
October 21, 2025 at 3:20 PM
ehlersdanlos.bsky.social
Today is Mast Cell Awareness Day, and Doctor Clair talks us through what mast cells are, root causes, and what you can do about them.

Watch now: youtu.be/r_UClhQBtRM?... #mcas #mastcellactivationsyndrome
Mast Cell Activation: Symptoms, Root Causes, and What You Can Do About It
YouTube video by Doctor Clair
youtu.be
October 20, 2025 at 3:33 PM
Reposted by The Ehlers-Danlos Society
thezebraalliance.bsky.social
Who doesn't love supporting a GREAT org & cause? And you can win stuff? We are in! 😉👉 Between 10/15 - 11/16, purchase a ticket for a chance to win!
Prize Basket #1 worth $658
Prize Basket #2 worth $653
💜 @ehlersdanlos.bsky.social 💜
#ehlersdanlossyndrome #EDS #hEDS
2025 End Of Year - Enter, Support, Win - The Ehlers Danlos Society
www.ehlers-danlos.com
October 16, 2025 at 5:29 PM
ehlersdanlos.bsky.social
#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 3, 2025 at 3:17 PM
ehlersdanlos.bsky.social
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/ ⁠
"Infographic titled 'Common Symptoms of Dysautonomia' by The Ehlers-Danlos Society. It shows seven illustrated human figures with icons representing symptoms: tachycardia (fast heart rate), hypotension (low blood pressure), dizziness/lightheadedness, gastrointestinal dysmotility (problems moving food through the digestive system), temperature and sweating dysregulation, sleep problems, and bladder issues."
October 1, 2025 at 1:47 PM
ehlersdanlos.bsky.social
Prolotherapy is a treatment that involves injecting an irritant solution (often sugar-based) into ligaments, tendons, or joints. [Thread] youtu.be/sigAJALk6vE?...
⁠
Prolotherapy: Exploring Its Role - Dr. Fraser Burling - 2024 GLC
YouTube video by The Ehlers-Danlos Society
youtu.be
September 29, 2025 at 12:50 PM
ehlersdanlos.bsky.social
#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
A Doctor’s Guide to Vascular EDS: Recognizing the Signs for Early Diagnosis
YouTube video by Doctor Clair
youtu.be
September 26, 2025 at 1:13 PM
Reposted by The Ehlers-Danlos Society
jefflubellc19.bsky.social
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/...
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK
Introduction This study explored the extent to which two measures of joint hypermobility, a marker of variant connective tissue, predict the development of long COVID after COVID-19 infection, and whe...
bmjpublichealth.bmj.com
September 19, 2025 at 11:52 AM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Zevra Therapeutics as Sponsors of the 2025 International Scientific Symposium! ⁠
September 18, 2025 at 8:13 PM
ehlersdanlos.bsky.social
🌎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.
September 18, 2025 at 8:11 PM
ehlersdanlos.bsky.social
New research into #hypermobileEDS! www.ehlers-danlos.com/exciting-new...
Exciting New Research Sheds Light on hEDS Biology - The Ehlers Danlos Society
We are excited to share a new paper published yesterday: Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology by Griggs M, Gensemer C, et al. (Immun...
www.ehlers-danlos.com
September 18, 2025 at 1:41 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Body Braid as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]
September 16, 2025 at 8:37 PM
ehlersdanlos.bsky.social
New from Dr. Clair's Corner! youtu.be/ovMSTnDRcvQ?...

#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals
A Doctor's Guide to EDS vs HSD: Key Differences Explained
YouTube video by Doctor Clair
youtu.be
September 16, 2025 at 8:33 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Guava Health as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]
Cover page with teal background and bold title: “How to Use Guava to Track Patient Progress – EDS, POTS, and beyond — one place for patients and providers.” Serves as the introduction to a guide for tracking patient health data. Guava dashboard summarizing key metrics—sleep, HRV, hip pain, mood, blood oxygen, physical activity, walking, and heart rate—across weekly date ranges with trend lines. Description emphasizes a unified view of activity, nutrition, lab results, and wearable metrics. Line graph from Guava integrating wearable device data such as sleep, daily steps, resting heart rate, and heart rate variability over time. Text explains support for Apple Health, Google Fit, Garmin, Oura, and more to track key activity and health metrics.
September 16, 2025 at 7:16 PM