My wife had EDS and did not know it! Why this EDS Awareness site was born... by the late John Ferman, founder: buff.ly/3SIMf8i #EhlersDanlosSyndrome #EDS #Hypermobility #HSD #Fibro #Fibromyalgia #Depression #Pain #NEISvoid #MedEd #MedSky #Doctors #Genetics #rheumatology #Nurses

Catch the Boston premiere and Academy Awards "For Your Consideration" screening of the EDS film COMPLICATED Dec 11th: www.eventbrite.com/e/boston-spe... #EDS #hEDS #HSD #Hypermobility #Complicated #Film #Disability #Spoonies #Zebras #FII #MedicalKidnap #MedSky #Doctors #Nurses #Parents

December 3rd, 2025 is International Day of Persons with Disabilities - something folks with EDS and HSD know a lot about, as the majority of us find ourselves disabled, sometimes in multiple ways: buff.ly/HJxQFBl #EDS #hEDS #HSD #MCAS #POTS #Disabilities #zebras #MedSky #IDPD

We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy this December in our newsletter... buff.ly/4HN9zN2 #EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #POTS #MCAS #MedicalKidnap #FII #Doctors

Reprising our best EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations www.chronicpainpartners.com/eds-holiday-... #EhlersDanlos #EDS #hEDS #HSD #Hypermobility #Fibro #Fibromyalgia #MECFS #NEISvoid #CPP #Spoonie #Spoonies #Zebras #Holidays

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-...

Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it www.chronicpainpartners.com/cerebral-ven... #EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology

Reprising our best EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations www.chronicpainpartners.com/eds-holiday-... #EhlersDanlos #EDS #hEDS #HSD #Hypermobility #Fibro #Fibromyalgia #MECFS #NEISvoid #CPP #Spoonie #Spoonies #Zebras #Holidays

My wife had EDS and did not know it! Why this EDS Awareness site was born... by the late John Ferman, founder: buff.ly/3SIMf8i #EhlersDanlosSyndrome #EDS #Hypermobility #HSD #Fibro #Fibromyalgia #Depression #Pain #NEISvoid #MedEd #MedSky #Doctors #Genetics #rheumatology #Nurses

Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025: buff.ly/y0TmObZ #EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky

We share the following with heavy hearts: In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness buff.ly/Vm7lTbi #EhlersDanlosSyndrome #EDS #hypermobility #hEDS #HSD #zebras #Spoonies #NEISvoid #POTS #MCAS #ChronicPain #Support #Autism #ADHD #Genetics

It's International Men's Day. Some of y'all want to keep it lighthearted, which I get. But please remember this day is about the unique issues faced by folks who identify as men. As a man who lives with depression & anxiety, men's issues are often overlooked & underrepresented.

And here it is, posted through tears. I'm so sorry to add to our collective grief this week! Ugh. 💔😭🫂 Please take excellent care of yourselves. Our existence is the best resistance and we need community now more than ever. ✌️💐 #EDS

We share the following with heavy hearts: In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness buff.ly/Vm7lTbi #EhlersDanlosSyndrome #EDS #hypermobility #hEDS #HSD #zebras #Spoonies #NEISvoid #POTS #MCAS #ChronicPain #Support #Autism #ADHD #Genetics

AWOL Zebra Podcast: Building Community (and Laughs) Around EDS buff.ly/ofignWQ #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support

Making Misdiagnosis and Misunderstanding a Thing of the Past - CPPs impact on the #EDS community over the last twelve years… buff.ly/3WvdAzt #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #CPP #ChronicIllness #NEISvoid #MedEd #MedSky #Zebras #Support

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025 buff.ly/UPemeY6 #EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity: buff.ly/lYfYnmv #EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid

New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome - another solid result from the Norris Lab at MUSC: www.chronicpainpartners.com/new-study-re... #hEDS #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #Science #Medicine #Research #MedEd #Doctors #Immunology #MCAS #MedSky

"How do I explain a condition like #EhlersDanlosSyndrome without giving a #biology lecture?..There is no quick..summary that does my experience justice..yet, people ask, well-meaning..unaware of the #EmotionalLabor they’re requesting.": buff.ly/2qGBZFc via @cppedsa.bsky.social #ChronicIllness #EDS

Making Misdiagnosis and Misunderstanding a Thing of the Past - CPPs impact on the #EDS community over the last twelve years… buff.ly/3WvdAzt #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #CPP #ChronicIllness #NEISvoid #MedEd #MedSky #Zebras #Support

Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025: buff.ly/y0TmObZ #EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky

We drafted a list of all the new documentaries out about EDS and related conditions. Check out the growing list here now: buff.ly/hJ9BacN #EhlersDanlos #Hypermobility #hEDS #HSD #MedEd #Zebras #NEISvoid #MECFS #Spoonies #MedSky #Film #Documentary #Doctors

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025 buff.ly/UPemeY6 #EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

AWOL Zebra Podcast: Building Community (and Laughs) Around EDS buff.ly/ofignWQ #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support

YES with one note: please be all your research — including any “resources“ you share with the doctor — are from scrupulously reliable sources.

Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis buff.ly/yZJQeDw #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky

Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity: buff.ly/lYfYnmv #EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid

Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity: buff.ly/lYfYnmv #EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid

From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors buff.ly/Dys6qeP #EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky

Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis buff.ly/yZJQeDw #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky

New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome - another solid result from the Norris Lab at MUSC: www.chronicpainpartners.com/new-study-re... #hEDS #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #Science #Medicine #Research #MedEd #Doctors #Immunology #MCAS #MedSky

Celebrate #InvisibleDisabilitiesWeek Oct 19-25, 2025 with us by checking out our new podcast episode on that very subject! buff.ly/OhQXbZY #EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #POTS #MCAS #Spoonies #Zebras #NEISVoid #Disability #DisCo

Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025: buff.ly/y0TmObZ #EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky

Celebrate #InvisibleDisabilitiesWeek Oct 19-25, 2025 with us by checking out our new podcast episode on that very subject! buff.ly/OhQXbZY #EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #POTS #MCAS #Spoonies #Zebras #NEISVoid #Disability #DisCo

Interview with Georgina Frankie: Author of “The Chemistry Test”, a romance featuring an EDSer as protagonist without the pity: buff.ly/lYfYnmv #EDS #hEDS #HSD #Hypermobility #Fiction #Romance #writing #Disability #Spoonies #Zebras #NEISvoid

Here's a clip from our new EDS Unplugged Podcast Episode 1 "Invisible Disabilities" discussing the benefits of the sunflower lanyard in the UK: #Zebras #NEISvoid #EDS #hEDS #HSD #MCAS #MedSky #Podcast #Hypermobility #Disability #Disabilities

"But the moment someone asked, “What do you do for #work?” the simplicity crumbled. That question carries so much weight. Most people expect a neat, socially acceptable answer.": buff.ly/bdEov7L via @cppedsa.bsky.social #society #career #ChronicIllness #InvisibleIllness

From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors buff.ly/Dys6qeP #EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky

Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more! buff.ly/UyLbCzo #EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research

Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025: buff.ly/y0TmObZ #EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky

Check it out! New #EDS podcast sponsored by CPP! Invisible Disabilities Week starts October 19th by the way.

Here's a clip from our new EDS Unplugged Podcast Episode 1 "Invisible Disabilities" discussing the benefits of the sunflower lanyard in the UK: #Zebras #NEISvoid #EDS #hEDS #HSD #MCAS #MedSky #Podcast #Hypermobility #Disability #Disabilities

Third. the inter-relationship of connective tissue and mast cells may lead people with #EDS or hypermobility spectrum disorder to be vulnerable to mast cell activation disorders, which can in turn prompt both #POTS and conditions like #LongCOVID and #MECFS. 8/20 link.springer.com/article/10.1...

🎓 Solve is proud to sponsor the Oct 31 #IACC Case Competition at University of Michigan Ross School of Business! Patients, advocates, & experts come together to tackle challenges like #LongCovid #ME/CFS #POTS & more. Registration (in-person or virtual) is free! ow.ly/XqgT50X6tQ5

October is #DysautonomiaAwarenessMonth For many with #LongCovid, dysautonomia means daily struggles with dizziness, palpitations, fatigue & more We need research, support & compassion Let’s #MakeNoiseForTurquoise this October #POTS #Dysautonomia #invisibleillness

October is #POTS Awareness Month! POTS is a serious condition where simply standing can cause rapid heart rate, dizziness, fainting, and crushing fatigue. It often strikes those with #MECFS & #LongCOVID. All month we’re sharing resources & raising visibility. Stay tuned!

From ME Research UK: Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. tinyurl.com/3f5sxbza

Over the yrs, we have seen more connection (via studies), and land up with more questions 😉 We stopped sharing the study - Preliminary info only bolsters the mental illness stereotype = Unnecessarily hurts (the mental health of) 🏳️‍⚧️ folks already dealing w enough BS. Unfortunately, progress can hurt 🥺

These are great suggestions! Would you add anything to this list? #chronicillness #raredisease #chronicpain #invisibleillness #EDS #hEDS #HSD #healthcare