#HypermobilitySpectrumDisorder
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ehlers-danlos.com
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 15, 2026 at 10:15 AM
thezebraalliance.bsky.social
How would you explain the effort it takes to stay stable so that people might understand?

linktr.ee/thezebraalliance #hypermobility #EDS #hEDS #HSD #ehlersdanlossyndrome #hypermobilityspectrumdisorder #connectivetissue #raredisease
Image by @ehlersdanlosbody showing the difference between typical mobility and hypermobility.
September 23, 2026 at 11:45 PM
ehlers-danlos.com
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
2023 Treatment: Adaptive Aids & Devices to Help with Symptoms - Mars Lombardi
YouTube video by The Ehlers-Danlos Society
youtu.be
September 17, 2026 at 4:25 PM
thezebraalliance.bsky.social
EVERY doctor should know this: Share it far and wide 👌😀

linktr.ee/thezebraalliance (found this comment on a FB post) #EDS #ehlersdanlossyndrome #HSD #hypermobilityspectrumdisorder #connectivetissue #raredisease #chronicillness #chronicpain #disability
My doctor said "if you cant connect the issues, think connective tissues" and I just wish someone had thought of that sooner.
September 17, 2026 at 3:31 PM
thezebraalliance.bsky.social
Have you learned to pace yourself? What tips do you have? What has worked for you? All the questions & answers 😉👉 I want all EDS types to share, because all have (co)morbidities.

#hEDS #HSD #EDS #chronicillness #chronicpain #invisibleillness #hypermobilityspectrumdisorder linktr.ee/thezebraalliance
ehlers-danlos.com The Ehlers-Danlos Society @ehlers-danlos.com · Sep 13
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
2025 Symposium - How do I Keep Going When Everything Hurts? - Dr. Sarah Cohen-Solomon
YouTube video by The Ehlers-Danlos Society
youtu.be
September 13, 2026 at 6:12 PM
thezebraalliance.bsky.social
Who wants to share what its like when you have a hip subluxation? Hip subluxations aren't discussed as much as shoulders, jaws, hands, and knees. Share your experience(s) 🩵🦓🩵
linktr.ee/thezebraalliance
#hEDS #EDS #HSD #hypermobility #hypermobilityspectrumdisorder #subluxations #ehlersdanlossyndrome
thezebraalliance.bsky.social The Zebra Alliance Community @thezebraalliance.bsky.social · Sep 6
Do you live with EDS?
Do you deal with subluxations? If so, what is something you wish people knew?

linktr.ee/thezebraalliance #chronicillness #EDS #hEDS #cEDS #aEDS #healthcare
A subluxation is where the bones in a joint slip over each other more than they normally should but do not fully separate or dislocate from each other. They can happen to any joint, but the most common arr jaws, shoulders, hands, and knee cap.
September 11, 2026 at 10:22 PM
sedsconnective.org
May is Hypermobility Awareness Month!
#ehlersdanlossyndrome #ehlersdanlosawareness #HypermobilitySpectrumDisorder
#hypermobilityawareness #EDS #HSD #paediatricGJH
A graphic by SEDSConnective for EDS HSD Awareness Month. The image has a white background with the SEDSConnective logo at the top. The main text reads: "What support devices do you use to help with your pain?" At the bottom it says, "EDS HSD Awareness Month with #sedsconnective."
May 2, 2025 at 12:05 PM
leohblooms.bsky.social
I had a steroid shot in my left knee yesterday. Bone-on-bone situation in there. Two hours of sleep last night, not tired, but amped +weird! Got my angry lupus rash +intense headache since last night.

#hypermobilityspectrumdisorder #hypermobilitysyndrome #heds #steroidshots #lupus #osteoarthritis
January 15, 2025 at 7:02 PM
montelwilliams.bsky.social
NEWS You Might Have Missed
@hypermobilityspectumdisorder
@hypermobilitymd
@thetracyrodriguez
@jeannie_di
#hypermobilityspectrumdisorder #hypermobility #hypermobilitysyndrome #mmj #mmjpatient #education #health #well #wellness #healthandwellnessjourney #care
March 24, 2025 at 12:07 PM
sarokel.bsky.social
Hypermobility hands and knees adjustment to lessen the hyperextension in the elbows

Planning on doing one of these a week. If there are any exercises you would like adjustments for let me know
SamKellyFitness on TikTok
Hypermobility and exercise 1 #samkellyfitnesshypermobility1 #hypermobility #hypotonia #hyperextension #hypermobilityspectrumdisorder #hypermobilitysyndrome #hypermobileehlersdanlossyndrome #persona...
vm.tiktok.com
August 14, 2023 at 5:04 PM
amandaromeart.bsky.social
And guess what type of patients can have issues with sphincter weakness and laxity, and I'm talking about in other parts of the body, too? EDS patients. 🙃

So, yeah, I'm totally trying this stuff out.

#ehlersdanlossyndrome #HypermobilitySpectrumDisorder #hypermobileehlersdanlossyndrome #GERD
October 24, 2025 at 2:54 AM
amandaromeart.bsky.social
A possible solution for some with GERD symptoms, especially those who have esophageal sphincter weakness and/or laxity: KEE - Karrfalt Esophageal Exercise.

#ehlersdanlossyndrome #HypermobilitySpectrumDisorder #hypermobileehlersdanlossyndrome #GERD

cureus.com/articles/873...
A Simple Exercise to Strengthen the Lower Esophageal Sphincter and Eliminate Gastroesophageal Reflux: An Autobiographical Case Report
A novel exercise is described for resistance training of the lower esophageal sphincter. Resistance is provided by gravity as food is swallowed and pushed up an incline into the stomach. The incline i...
cureus.com
October 24, 2025 at 2:54 AM
prodigalhoosier.medsky.network
You ARE worth more than you do.
Your worth is INNATE and NOT connected to your productivity!

#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
ehlers-danlos.com The Ehlers-Danlos Society @ehlers-danlos.com · Nov 1
🧠💗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
prodigalhoosier.medsky.network
Excited to be joining this fantastic event for the #hypermobileEhlersDanlossyndrome ( #hEDS) and #hypermobilityspectrumdisorder ( #HSD) community today!
sedsconnective.org SEDSConnective @sedsconnective.org · Oct 24
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... “
November 1, 2025 at 1:11 PM
ehlers-danlos.com
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
2025 Symposium - Is it Just Me, Or Is This A Full Time Job? - Dr. Valerie Iovine Rogers
YouTube video by The Ehlers-Danlos Society
youtu.be
July 31, 2026 at 9:37 AM
ehlers-danlos.com
⏰ 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
Promotional graphic for the Ehlers-Danlos Society Global Learning Conference 2026. At the top left is the conference logo and the text: “The Ehlers-Danlos Society Global Learning Conference 2026 – Connecting the Stripes: Exploring Comorbidities in EDS and HSD.” Large teal and purple text reads, “Final Chance to Register.” Event details below list: July 24–26, 2026; in-person and virtual event; Courtyard Dallas Allen at the Allen Event Center, Dallas, USA. The right side features a circular network design with photos from past conferences, including a keynote speaker at a podium, attendees posing and waving together, two attendees smiling, and a participant standing in the conference hall. The background is a soft light blue gradient with curved abstract accents.
July 23, 2026 at 5:28 PM
ehlers-danlos.com
You can find all of the prompts and descriptions here (which can be read in 22 languages - just change the language at the bottom of the screen): www.ehlers-danlos.com/may-awarenes...

Who's joining us?⁠ ⁠

#MyEDSChallenge #EhlersDanlossyndrome #MyHSDChallenge #HypermobilitySpectrumDisorder
May Awareness - Social Media Challenge - The Ehlers Danlos Society
www.ehlers-danlos.com
April 30, 2026 at 3:40 PM
ehlers-danlos.com
Create your fundraising page in minutes and learn more at may-awareness-fundraiser.funraise.org

#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
Start Your May Awareness Fundraiser
may-awareness-fundraiser.funraise.org
April 23, 2026 at 4:14 PM
ehlers-danlos.com
Many people living with #EhlersDanlosSyndrome and #HypermobilitySpectrumDisorder continue to face delayed diagnosis, fragmented care, and limited provider awareness.
March 23, 2026 at 4:31 PM
ehlers-danlos.com
Have you got your ticket for the #FemaleHealth Summit? It's coming up fast on March 7, and we have some incredible speakers joining us across a breadth of topics: www.ehlers-danlos.com/female-healt... #EhlersDanlossyndrome #HypermobilitySpectrumDisorder
Colorful promotional graphic for The Ehlers-Danlos Society Female Health Summit virtual conference. The design features soft pastel shapes and icons on a light gradient background. At the top, the Ehlers-Danlos Society logo appears above the large headline “Female Health Summit,” with the subtitle “Virtual Conference for Community Members and Healthcare Professionals.” Centered text reads “1 WEEK TO GO” in large bold letters. Along the bottom, a dark blue banner lists event details: “Saturday, March 7, 2026,” “8:45 AM – 5:30 PM EDT,” and “Online Webinar,” accompanied by small calendar, clock, and computer icons.
March 2, 2026 at 3:20 PM
ehlers-danlos.com
Applications are now open: www.ehlers-danlos.com/eds-echo-hea... #advocacy #ehlersdanlossyndrome #hypermobilityspectrumdisorder
EDS ECHO Health Advocacy - The Ehlers Danlos Society
www.ehlers-danlos.com
January 23, 2026 at 2:10 PM
ehlers-danlos.com
💜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
ehlers-danlos.com
View the event agenda here and see today's topics and speakers: www.ehlers-danlos.com/wp-content/u...

#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
www.ehlers-danlos.com
November 1, 2025 at 1:23 PM