Teal blue square graphic about EDS Awareness features a large black and white zebra striped looped awareness ribbon upper left. "EDS Awareness Month" in orange text over that. A graphic of a party horn or favor emitting sparks and stars. A text bubble reads "We have lots of ways to celebrate EDS Awareness!" in teal on white. A white circular logo bottom right reads: "EDS Awareness" and "Ehlers-Danlos Syndromes". Bottom black text reads: www.chronicpainpartners.com

We've got 22 Ways to Celebrate EDS Awareness Month in May! See if one or two suit you:

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#EDSAwareness #EDS #hEDS #Hypermobility #HSD #MedEd #Zebras #NEISvoid #Doctors #MedX #Spoonies

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Back from vacation and having some of the worst chronic pain flares I’ve had in a while

Send some love 💕 hoping to get some tips to get some easy food and pain management, anything helps 🔥

cash.app/$adoreagony

#chronicpain #disabledsws #bbwsky #pocsky #fatsky #eds #hypermobility

A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.

EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors

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#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky

Recommended Books- Living and Coping with EDS and Related Diseases Recommended Books provides a listing or books and other reading resources for those living and coping with EDS, MCAD and other comorbid diseases. A must see and read list of books!

“I still..rec Dr. Brad Tinkle’s Joint #Hypermobility Handbook..tho it’s technically outdated now as far as #diagnostic labels & criteria go, it’s still an excellent all-encompassing desc of our most common body-wide issues”: buff.ly/dtibSOW

via @h2ohtwist.bsky.social
#EDS #BookReview

Our chair/founder @JGjanegreenmbe.bsky.social
was invited by ADHD360 clinic & Jo Platt MP for the #ADHD event raising awareness, lived experiences with Dr Ahmed Under Parliamentary Minister for Health Innovation and Safety at the HouseofCommons
March 26th
#neurodivergence #hypermobility

Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:

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#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky

Solve for Both X and Y- Mechanical and Biochemical Approaches Solve for both X and Y- I don't recommend any single particular therapy/remedy for everyone, as clearly no single remedy will work for everyone nor will always be appropriate. But I do recommend some…

Solve for both X and Y when treating #hypermobility and Ehlers-Danlos Syndromes:

ohtwist.com/solve-for-bo...

#EDS #hEDS #HSD #Fibromyalgia #MedEd #FOAMed #MedTwitter #doctors #nurses #NEISvoid

Jen Kain about her new EDS doc “Exhausted Existence” – EDSAwareness.com Chronic Pain Partners’ Karina Sturm spoke with Jen Kain, the filmmaker behind “Exhausted Existence”. Kain’s documentary delves into the world of Ehlers-Danlos syndrome (EDS) and the lived experiences…

Our interview with Jen Kain about her new EDS doc “Exhausted Existence”:

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#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Documentary #Medicine #Doctors #NEISvoid #Film #MedTwitter #MedSky

Recommended Books- Living and Coping with EDS and Related Diseases Recommended Books provides a listing or books and other reading resources for those living and coping with EDS, MCAD and other comorbid diseases. A must see and read list of books!

My list of some recommended books on #EhlersDanlos Syndromes & #Hypermobility: ohtwist.com/eds-resource...

#EDS #HSD #fibromyalgia #MedEd #doctors #nurses #patients #medicine #EhlersDanlos #SED #NEISvoid

The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025

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#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

What’s the worst part about #hypermobility ? Probably subplexing my ankles every time I orgasm. When I said I wanted to not be able to walk straight this is NOT what I meant!

#chronicillness #chronicpain #wlw

When Else to Suspect Ehlers-Danlos Syndrome - Oh TWIST When Else to Suspect Ehlers-Danlos Syndrome looks at additional signs and symptoms of the disease and its comorbid diseases.

When Else to Suspect Ehlers-Danlos Syndrome or #HSD
ohtwist.com/when-else-to...

#EDS #HMS #Fibromyalgia #MedEd #Doctors #Spoonies #Hypermobility #Zebras #MedTwitter #NEISvoid #Autistic #Autism #ADHD #MedX #MedSky

The Beighton Score as a measure of generalised joint hypermobility - Rheumatology International The Beighton Score (BS) is a set of manoeuvres in a nine-point scoring system, used as the standard method of assessment for Generalised Joint Hypermobility (GJH). It was originally developed as an…

The Beighton Score as a measure of generalized joint #hypermobility (a review) 2021 by Malek, Reinhold, Pearce buff.ly/2Syq5uV

#EhlersDanlos #EDS #hEDS #HSD #Fibromyalgia #fibro #Meded #FOAMed medicine #NEISvoid #MedTwitter #Doctors #Rheumatology #Genetics #MedSky

Had wild plans for a new week, new start kinda deal with returning to morning walks and adhering to a schedule…a night of next-to-no sleep and high pain has thrown those plans out the window. A challenge of this stupid condition is the constant need to be adaptable. #hypermobility #eds #hEDS

Autonomic Dysfunction card | Stickman Comms This autonomic dysfunction card says "I have autonomic dysfunction. My autonomic system is faulty, affecting: breathing, heart rate (HR) blood pressure (BP), digestion, temperature control, sweating,…

have no tension/suspense (Even watching competitive sports can worsen my symptoms due to the suspense!) And when I'm a bit improved, doing slow, gentle movements with lots of muscle engagement to help boost bloodflow.
#Hypermobility #PoTS
www.stickmancommunications.co.uk/product-page...

I tried to use my standing desk for 20 minutes and my legs are killing me. My joints and feet hurt so bad

#hypermobility #hypermobile

The HMSA | The Hypermobility Syndromes Association The hypermobility syndromes association (HMSA) provides support and information for everyone with a hypermobility syndrome as well as health and social care professionals who support them.

Do you live with a Hypermobility Syndrome?
DYK: There are 6 (known) Types of Hypermobility Syndromes. Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are two.

#hypermobility #hypermobilitysyndrome #HSD #hEDS #EDS #ehlersdanlossyndrome #sticklersyndrome #marfan #osteogenesisimperfecta

Hypermobility Symptoms: 10 Questions Answered by Someone Who Lives With It Hypermobility Symptoms: 10 Questions Answered by Someone Who Lives With It by indie makeup expert Cordelia Frost

Hypermobility Symptoms: 10 Questions Answered by Someone Who Lives With It phyrra.net/hypermobilit... #hypermobility

Ha ha ha...

Stabilising a wet noodle in the wind.

My spine & legs laughed in recognition.

Bambi Legs and spaghetti spine over here.

I struggle with pen/pencil control too.

'Handwriting like a spider fell in an inkwell' school teachers 'helpful' feedback

#audhd
#hypermobility

I honestly dealing with the majority of these daily. Life can feel exhausting.

#EDS #edsawareness #hypermobility #hsd #chronicillness

A Thought

The ties that bind us are elastic.

They stretch more to make room for the space between us.

The bind is often still tied, but the space is larger.

Sometimes. Eventually. The elastic snaps and the tie is broken.

#thetiesthatbindus
#audhd
#hypermobility

Joint Hypermobility Syndrome May Be Missed in Primary Care Experts highlight the role of primary care in identifying joint hypermobility syndrome and distinguishing it from connective tissue disorders.

#Hypermobility As a person dx in my 40s (!) with osteoarthritis due to damage from hypermobility, I really f*ing wish peds and other docs were not taught that this is benign. And it can be much worse than just joint damage. www.medscape.com/viewarticle/...

black wireless keyboard and mouse, in front of a laptop slightly raised on a stand. With the base of a lamp to the right and a red cube timer to the left on the desk.

My laptop keyboard is no longer usable, so at home I've been using a tiny remote keyboard, and it's definitely not been good for my posture and arm pain. Today I picked up my new ergonomic keyboard and mouse - SO much better. #Hypermobility

We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy…

www.chronicpainpartners.com/in-memory-of...

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #Doctors

I need help with "shotgunning" my hip because its out. This is truly not sexy. Who wants to help?
Ouchies.
#hypermobility

Being double jointed might mean weaker connective tissue, raising your risk for long COVID & POTS.

US doctors warn that viruses can break down this fragile collagen. Monitor your health!

#TheLolgic #hypermobility #LongCovid #chronicillness #POTS

My new giant pregnancy/body pillow AND my sleep apnea mouth device arrived today! Pillow has to puff up and off-gas and I have to mold the mouth thing… but I’m another step closer to maybe improving my sleep? #LongCovid #MECFS #SleepApnea #Hypermobility

An excellent channel by Dr Linda Bluestein that specializes in #hypermobility and #EDS.

for those of us who play the 'Is it still dislocated, or does it just hurt a bit more than usual' and 'am I sick, or is this just a new symptom' games on a regular basis, to go by

#ChronicIllness #EhlersDanlosSyndrome #Hypermobility #NEISVoid ♿️

Question for my #ChronicPain peeps: How do you keep your spirits up, when the medical community isn't helping you? I'm trying so hard, but I'm down, friends. Increasing pain daily + poor sleep = low spirits.

Any tips for maintaining mental health w. chronic pain appreciated. #Hypermobility #HEDS