#hypermobilityspectrumdisorders
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ehlers-danlos.com
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
July 28, 2026 at 1:34 PM
ehlers-danlos.com
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
www.ehlers-danlos.com
August 11, 2026 at 8:27 AM
ehlers-danlos.com
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
August 3, 2026 at 7:13 PM
ehlers-danlos.com
Not all stripes are black and white 🌈🦓⁠
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The Ehlers-Danlos Society recognizes and celebrates Pride Month with the LGBTQIA+ members of our dazzle! 🏳️‍🌈⁠
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#PrideMonth #EhlersDanlossyndromes #HypermobilitySpectrumDisorders
Zebra Pride by The Ehlers-Danlos Society. Two zebras stand forehead-to-forehead against a light gray background with soft white bokeh effects. The zebra on the left is painted in rainbow colors, while the zebra on the right has traditional black-and-white stripes. The Ehlers-Danlos Society logo appears in the upper left corner. Large rainbow-gradient text at the bottom reads “Zebra Pride.” The image symbolizes pride, diversity, and community within the Ehlers-Danlos community.
June 1, 2026 at 2:05 PM
thezebraalliance.bsky.social
For most - esp for folks with #hEDS - it takes so darn long to be diagnosed, irreparable damage has been done.
Fact: The world needs more doctors who can identify #EhlersDanlosSyndrome and #HypermobilitySpectrumDisorders 🩵🦓🩵

linktr.ee/thezebraalliance #EDS #chronicillness #chronicpain #disability
Doctor Explains Why EDS Takes So Long to Diagnose
YouTube video by Doctor Clair
youtu.be
July 31, 2026 at 2:20 AM
ehlers-danlos.com
For many people living with #EhlersDanlossyndromes (EDS) or #hypermobilityspectrumdisorders (HSD), diagnosis is only the start. The next challenge is navigating care, being heard, finding support, and accessing joined-up services. ⁠
Promotional graphic for The Ehlers-Danlos Society Model of Care Listening Labs virtual event series. Large blue gradient banner reads “LISTENING LABS” above the title “The Lived Experience.” Icons and labels indicate this is a virtual event for participants in Canada, the USA, and the UK. The right side shows a woman wearing headphones during a video call at a computer. Blue and teal wave graphics run along the bottom.
May 26, 2026 at 12:31 PM
ehlers-danlos.com
☑️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
Wide-format The Ehlers-Danlos Society Community Feedback Survey graphic with the Society’s zebra logo, large “COMMUNITY FEEDBACK SURVEY” text, and a checklist icon. Four people are shown participating in activities with laptops or a notebook.
August 19, 2026 at 12:59 PM
ehlers-danlos.com
The temporomandibular joint (TMJ) connects the lower jaw to the skull. It plays an important role in speaking and chewing.⁠
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Some people with #classicalEDS, #hypermobileEDS, or #hypermobilityspectrumdisorders may experience problems with this joint or the muscles and ligaments that support it.⁠
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Educational infographic from The Ehlers-Danlos Society about temporomandibular joint dysfunction (TMJ). The title reads "Temporomandibular Joint Dysfunction." The graphic lists common symptoms: clicking, popping, or grinding when moving the jaw; difficulty opening the mouth fully; jaw locking when opening the mouth; and pain around the jaw, ear, or temples. It notes that these symptoms can make speaking more difficult. Below the text is a side-view illustration of a skull with the temporomandibular joint highlighted in red to show the affected area.
August 3, 2026 at 9:12 AM
ehlers-danlos.com
Some people with #periodontalEDS (pEDS), #hypermobileEDS (hEDS), or #hypermobilityspectrumdisorders (HSD) have trouble producing or sustaining their voice, also known as #dysphonia.⁠
Educational infographic from The Ehlers-Danlos Society about dysphonia (difficulty producing or sustaining the voice). It explains that some people with periodontal EDS, hypermobile EDS (hEDS), or hypermobility spectrum disorders (HSD) may have a hoarse, weak, breathy, or strained voice. Possible causes include poor coordination or hypermobility of the vocal cords, reduced vocal cord vibration due to tissue differences, and reduced movement of the cricoarytenoid joint, which controls vocal cord position and movement. An illustration shows a person holding their throat to indicate voice or throat discomfort.
August 3, 2026 at 5:25 PM
bristolbrc.bsky.social
❓How can we improve pain management for people with #HypermobilitySpectrumDisorders?

🫂 Our researcher Anna Hurley-Wallace spoke to people with hypermobility disorders, and their family and friends

In this blog, she tells us what she learned 👇
bit.ly/46GazRo

#HSD #EDS #ChronicPain
Pain Management Priorities from People with Hypermobility
A Patient and Public Involvement project led by Anna Hurley-Wallace (University of Bristol)What is this project about?Long-term (‘chronic’) joint pain is a common problem for people with hypermobility...
bit.ly
September 17, 2025 at 10:02 AM
leashunleashed.bsky.social
This is the note attached to my physio appt tomorrow:
"Right kneecap went rogue on Thurs. Used crutches. Saturday, Right wrist went to hell. I am the Incredible Disintegrating Woman, World's worst superhero.🤦‍♀️"
#HypermobilitySpectrumDisorders are never dull. You need a sense of humour to survive.
January 12, 2025 at 6:16 PM