Tossing, turning, and waking up exhausted? 😴💤 Many people with #EhlersDanlossyndrome & #hypermobilityspectrumdisorder struggle with falling asleep, staying asleep, and feeling rested—but why? [Thread]
March 14, 2025 at 3:42 PM
Tossing, turning, and waking up exhausted? 😴💤 Many people with #EhlersDanlossyndrome & #hypermobilityspectrumdisorder struggle with falling asleep, staying asleep, and feeling rested—but why? [Thread]
You ARE worth more than you do.
Your worth is INNATE and NOT connected to your productivity!
#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
Your worth is INNATE and NOT connected to your productivity!
#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
🧠💗Today is the EDS ECHO Summit: Mental Health virtual event!
🌎We are joined by 431 attendees, including 228 healthcare professionals, representing 25 countries [Thread]
🌎We are joined by 431 attendees, including 228 healthcare professionals, representing 25 countries [Thread]
November 1, 2025 at 3:31 PM
You ARE worth more than you do.
Your worth is INNATE and NOT connected to your productivity!
#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
Your worth is INNATE and NOT connected to your productivity!
#EDSECHOMentalHealth #MentalHealthMatters #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
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
linktr.ee/thezebraalliance #hypermobility #EDS #hEDS #HSD #ehlersdanlossyndrome #hypermobilityspectrumdisorder #connectivetissue #raredisease
September 23, 2026 at 11:45 PM
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
linktr.ee/thezebraalliance #hypermobility #EDS #hEDS #HSD #ehlersdanlossyndrome #hypermobilityspectrumdisorder #connectivetissue #raredisease
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/
Dysautonomia - The Ehlers Danlos Society
www.ehlers-danlos.com
May 29, 2025 at 9:57 AM
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/
New from Dr. Clair's Corner! youtu.be/ovMSTnDRcvQ?...
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals
#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
New from Dr. Clair's Corner! youtu.be/ovMSTnDRcvQ?...
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals
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
Signs You May Have HSD (Hypermobility Spectrum Disorder) | Symptoms, Diagnosis & Management
YouTube video by Doctor Clair
youtu.be
May 2, 2025 at 10:27 AM
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
Share your lived experiences with @ehlersdanlos.bsky.social to help with a greater understanding and diagnosis of #EDS and #HSD.
#ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder
#ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder
The Road to 2026 will update the understanding, diagnosis, & management of Ehlers-Danlos syndromes & hypermobility spectrum disorders.
The Ehlers-Danlos Society’s role in this process is to bring the patient voice to the table, and we need your help: www.ehlers-danlos.com/story/your-v...
The Ehlers-Danlos Society’s role in this process is to bring the patient voice to the table, and we need your help: www.ehlers-danlos.com/story/your-v...
February 23, 2025 at 7:57 PM
Share your lived experiences with @ehlersdanlos.bsky.social to help with a greater understanding and diagnosis of #EDS and #HSD.
#ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder
#ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder
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
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-...
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
Many people living with #EhlersDanlosSyndrome and #HypermobilitySpectrumDisorder continue to face delayed diagnosis, fragmented care, and limited provider awareness.
Excited to be joining this fantastic event for the #hypermobileEhlersDanlossyndrome ( #hEDS) and #hypermobilityspectrumdisorder ( #HSD) community today!
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... “
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
Excited to be joining this fantastic event for the #hypermobileEhlersDanlossyndrome ( #hEDS) and #hypermobilityspectrumdisorder ( #HSD) community today!
More than being bendy:
Chewing, Swallowing, and Communication can be difficult to impossible for some people with #EDS and #HSD 👄
#EhlersDanlosSyndrome #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness #dynamicdisability #disability #invisibleillness
Chewing, Swallowing, and Communication can be difficult to impossible for some people with #EDS and #HSD 👄
#EhlersDanlosSyndrome #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness #dynamicdisability #disability #invisibleillness
🗣️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
#Hypermobility
EDS, HSD, & the Orofacial Region - Chewing, Swallowing - Christina Semonick - 2024 GLC
YouTube video by The Ehlers-Danlos Society
youtu.be
August 6, 2026 at 4:34 PM
More than being bendy:
Chewing, Swallowing, and Communication can be difficult to impossible for some people with #EDS and #HSD 👄
#EhlersDanlosSyndrome #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness #dynamicdisability #disability #invisibleillness
Chewing, Swallowing, and Communication can be difficult to impossible for some people with #EDS and #HSD 👄
#EhlersDanlosSyndrome #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness #dynamicdisability #disability #invisibleillness
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
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
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
Who's joining us?
#MyEDSChallenge #EhlersDanlossyndrome #MyHSDChallenge #HypermobilitySpectrumDisorder
Please share your experiences in the comments. Let's bring awareness to this topic. 🩵🦓🩵
#chronicpain #EDS #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder #HSD #hEDS #chronicillness
#chronicpain #EDS #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder #HSD #hEDS #chronicillness
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
#EDS and #HSD can cause both acute and chronic pain.
There are many ways to manage #pain: www.ehlers-danlos.com/september-is... #PainMonth
September is World Pain Month - The Ehlers Danlos Society
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.
www.ehlers-danlos.com
September 4, 2025 at 5:04 PM
Please share your experiences in the comments. Let's bring awareness to this topic. 🩵🦓🩵
#chronicpain #EDS #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder #HSD #hEDS #chronicillness
#chronicpain #EDS #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder #HSD #hEDS #chronicillness
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untitled unicorn sketch; lonely piece of meat in the cold
nothing less
drawing program: procreate
time: 1 hour 37 minutes
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#rainaintheclouds #sketch #zebra #chronicillnessart #disabledartist #ventart #animalartist #digitalart #hypermobilityspectrumdisorder
untitled unicorn sketch; lonely piece of meat in the cold
nothing less
drawing program: procreate
time: 1 hour 37 minutes
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#rainaintheclouds #sketch #zebra #chronicillnessart #disabledartist #ventart #animalartist #digitalart #hypermobilityspectrumdisorder
December 18, 2024 at 11:48 AM
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untitled unicorn sketch; lonely piece of meat in the cold
nothing less
drawing program: procreate
time: 1 hour 37 minutes
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#rainaintheclouds #sketch #zebra #chronicillnessart #disabledartist #ventart #animalartist #digitalart #hypermobilityspectrumdisorder
untitled unicorn sketch; lonely piece of meat in the cold
nothing less
drawing program: procreate
time: 1 hour 37 minutes
⋆
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#rainaintheclouds #sketch #zebra #chronicillnessart #disabledartist #ventart #animalartist #digitalart #hypermobilityspectrumdisorder
Learn more about symptoms, diagnosis, and management of #HypermobilitySpectrumDisorder ( #HSD) in this video with Dr. Clair Francomano. youtu.be/93u8edKfbMQ?...
Signs You May Have HSD (Hypermobility Spectrum Disorder) | Symptoms, Diagnosis & Management
YouTube video by Doctor Clair
youtu.be
March 20, 2025 at 4:25 PM
Learn more about symptoms, diagnosis, and management of #HypermobilitySpectrumDisorder ( #HSD) in this video with Dr. Clair Francomano. youtu.be/93u8edKfbMQ?...
Create your fundraising page in minutes and learn more at may-awareness-fundraiser.funraise.org
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
Start Your May Awareness Fundraiser
may-awareness-fundraiser.funraise.org
April 23, 2026 at 4:14 PM
Create your fundraising page in minutes and learn more at may-awareness-fundraiser.funraise.org
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#Ad "Spent the weekend talking all things Sodii.com.au at @ehlersdanlos.bsky.social Global Learning Conference. A chance to connect with an incredible community across 3 days sharing some salty hydration 💦🧂"
#sponsored #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#sponsored #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
February 11, 2025 at 5:46 AM
#Ad "Spent the weekend talking all things Sodii.com.au at @ehlersdanlos.bsky.social Global Learning Conference. A chance to connect with an incredible community across 3 days sharing some salty hydration 💦🧂"
#sponsored #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#sponsored #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
Many people with #EhlersDanlossyndrome (EDS) or #hypermobilityspectrumdisorder (HSD) also experience #chronicfatigue and other symptoms common in ME/CFS.
August 21, 2025 at 12:22 PM
Many people with #EhlersDanlossyndrome (EDS) or #hypermobilityspectrumdisorder (HSD) also experience #chronicfatigue and other symptoms common in ME/CFS.
Let’s make EDS & HSD visible! Share your framed pic in the comments, tag #ZebraStrong, and why awareness is important for you.
#DayoftheZebra #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#DayoftheZebra #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
January 31, 2025 at 5:04 PM
Let’s make EDS & HSD visible! Share your framed pic in the comments, tag #ZebraStrong, and why awareness is important for you.
#DayoftheZebra #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#DayoftheZebra #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
May is #EhlersDanlosSyndrome (#EDS) and #HypermobilitySpectrumDisorder (#HSD) Awareness Month, so I'm saying hi to all my fellow humans, whose body decided to make their life extra challenging. 🦓
May 2, 2024 at 6:14 PM
May is #EhlersDanlosSyndrome (#EDS) and #HypermobilitySpectrumDisorder (#HSD) Awareness Month, so I'm saying hi to all my fellow humans, whose body decided to make their life extra challenging. 🦓
Zebras, We hope you will join EDS & HSD Awareness Month with @ehlersdanlos.bsky.social and TZA 🩵🦓🩵
linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #EDSawareness #raredisease #chronicillness #dynamicdisability #disability
linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #EDSawareness #raredisease #chronicillness #dynamicdisability #disability
🤳🏽Starting tomorrow, May 1st! Join the Social Media Challenge.
Use the 31 daily themes (shown in the image) as prompts for your social media posts from May 1-31st to share your journey and raise awareness.
Use the 31 daily themes (shown in the image) as prompts for your social media posts from May 1-31st to share your journey and raise awareness.
April 30, 2026 at 4:16 PM
Zebras, We hope you will join EDS & HSD Awareness Month with @ehlersdanlos.bsky.social and TZA 🩵🦓🩵
linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #EDSawareness #raredisease #chronicillness #dynamicdisability #disability
linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #EDSawareness #raredisease #chronicillness #dynamicdisability #disability
Sarah is set up and ready to talk to GCSE and A-level students all about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)—together, we dazzle!
#RareDiseaseDay #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#RareDiseaseDay #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
February 28, 2025 at 12:59 PM
Sarah is set up and ready to talk to GCSE and A-level students all about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)—together, we dazzle!
#RareDiseaseDay #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
#RareDiseaseDay #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
DYK: #CranioCervicalInstability is a very common comorbidity of EDS and HSD. 🩻🧡🦓🧡
... Thankfully, other countries are smart enough to keep funding medical research.
linktr.ee/thezebraalli...
#CCI #EDS #HSD ##ehlersdanlos #ehlersdanlossyndrome #hypermobilityspectrumdisorder #hEDS #raredisease
... Thankfully, other countries are smart enough to keep funding medical research.
linktr.ee/thezebraalli...
#CCI #EDS #HSD ##ehlersdanlos #ehlersdanlossyndrome #hypermobilityspectrumdisorder #hEDS #raredisease
New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders 2025
buff.ly/dd78kd5
#EDS #hEDS #HSD #Hypermobility #CCI #Chiari #ChiariMalformation #Neurology #Zebras #CCS #MedEd #MedSky #Medicine #CTD #Doctors
buff.ly/dd78kd5
#EDS #hEDS #HSD #Hypermobility #CCI #Chiari #ChiariMalformation #Neurology #Zebras #CCS #MedEd #MedSky #Medicine #CTD #Doctors
New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders – EDSAwareness.com
A recent study conducted by Ruhoy et al. investigates the frequency of comorbidities and the need for neurosurgical interventions in individuals with connective tissue disorders (CTDs), offering…
buff.ly
May 11, 2025 at 5:38 PM
DYK: #CranioCervicalInstability is a very common comorbidity of EDS and HSD. 🩻🧡🦓🧡
... Thankfully, other countries are smart enough to keep funding medical research.
linktr.ee/thezebraalli...
#CCI #EDS #HSD ##ehlersdanlos #ehlersdanlossyndrome #hypermobilityspectrumdisorder #hEDS #raredisease
... Thankfully, other countries are smart enough to keep funding medical research.
linktr.ee/thezebraalli...
#CCI #EDS #HSD ##ehlersdanlos #ehlersdanlossyndrome #hypermobilityspectrumdisorder #hEDS #raredisease
Been playing with designing on Forza 6 and of course I had to rep EDS & HSD Awareness Month!!
It's nothing special but I'm happy!!
#EhelersDanlosSyndrome #HypermobilitySpectrumDisorder @ehlersdanlos.bsky.social #ForzaHorizon6
It's nothing special but I'm happy!!
#EhelersDanlosSyndrome #HypermobilitySpectrumDisorder @ehlersdanlos.bsky.social #ForzaHorizon6
May 25, 2026 at 11:54 AM
Been playing with designing on Forza 6 and of course I had to rep EDS & HSD Awareness Month!!
It's nothing special but I'm happy!!
#EhelersDanlosSyndrome #HypermobilitySpectrumDisorder @ehlersdanlos.bsky.social #ForzaHorizon6
It's nothing special but I'm happy!!
#EhelersDanlosSyndrome #HypermobilitySpectrumDisorder @ehlersdanlos.bsky.social #ForzaHorizon6