Thank you @joshnewburymp.bsky.social for leading this debate on the lack of an NHS care pathway for Ehlers Danlos Syndrome patients with Craniocervical Instability.

Everything he describes, Olivia has been through and is still going through.

#EDS #CCI @achronicvoice.com @ehlersdanlos.bsky.social

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

It's an ongoing project.

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

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#FrenchLesson #NativeFrenchTutor #French #languagelearning #frenchlanguage #tutor #education #teacher #FrenchTutor #EDS

This really is a never-ending story.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Recognize any of the following?

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness

It’s rude of my disabilities to disable me, but at least I have my eight (8) library books to keep me company 🙂‍↕️

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #WheelchairUser #EDS #EhlersDanlosSyndrome #AmReading #BookSky #LibraryKid #Libby #AmReadingFantasy

What are you looking to change when it comes to your healing journey?

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness

Changes for the #EhlersDanlosCommunity don't mean that the work is ever done.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

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:

buff.ly/bhtQQQ2

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

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

Just because the criteria is changing doesn't mean that the story is over.

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

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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

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

New diagnostic criteria for EDS?

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Listen, I'm not saying I will let my chronic illness beat me. Im just saying if I were a horse, I would have been put down years ago.

Just sayin 🤷‍♀️😅😉

linktr.ee/thezebraalliance
#chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #memes #jokes

Knee brace from NHS orthotics is vastly superior. They bent the metal to fit my wonky legs. No more dead foot! My skin isn’t enjoying it but my knee is so much happier. #EDS

Ehlers Danlos Syndrome and Men: Three Key Issues Men and their experiences living with hypermobile Ehlers Danlos syndrome is a whole topic…one that doesn’t get nearly enough attention in my opinion.  When you look online for info…

Yes, guys have EDS too.

#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

Mam potize s telefonem, ale odmitam, ze bych potrebovala novy, protoze jsou vsechny vetsi a tezsi a ja mam problem udrzet i tento. Dnes jsem si v obchode kvuli tomu tezkala/zkousela telefony a pripadala si jako pitomec, ze musim resit i par gramu a milimetru. #eds #delamcomuzu

Gastrointestinal Autonomic Disorders The gastrointestinal (GI) system and the autonomic nervous system (ANS) have a complex relationship, and disruptions to this relationship can lead to a range of GI disorders, such as autonomic gut dis...

Many w Ehlers-Danlos Syndrome also have Autonomic Nervous System Dysregulation/Dysfunction. This is where the brain-gut connection comes into play.
#gastronomy #gastroenterology #autonomicnervoussystemdysfunction #braingut #neurology #chronicillness #EDS #hEDS #ehlersdanlossyndrome #HSD

I feel a tad called out!!!

#ChronicIllness #SpéirGorm #SpéirGhorm #SpeirGorm #BrainFog #EDS #Pots #MCAS #Illness #Disability #Ireland #ChronicIllnessHumour

So many TZA Community members live w gut disorders, often comorbid, so we really appreciate that there are docs specializing in the neuro and gut connection (treatment).
DYK: GERD, IBS, Functional Dyspepsia, and Gastroparesis are common comorbidities for folks w #EDS and #HSD 🩵🦓🩵
#chronicillness

Diagnosing EDS? (The Why & How of Complex Conditions) ***** Diagnosis.            It should–at least in theory–be useful for treatment planning. Having an identified condition should also mean that the prognosis is reasonably clear, at lea…

What's your take on the subject of diagnosis?

#BlogPost #Diagnosis #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome One-fifth of Covid-19 patients suffer a severe course of Covid-19 infection; however, the specific causes remain unclear. Mast cells (MCs) are activat…

New in 2020 via Afrin, Weinstock and Molderings: Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome - implications for treatment if true
buff.ly/39RyJK1
#MCAS #MCAD #EDS #MedTwitter #COVID19 #MECFS #NEISvoid #LongCOVID

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

buff.ly/9sZKVdD

#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

We feel this in our souls 😅

We highly recommend giving @positivelyrheum.bsky.social a follow for some giggles 😄

#chronicillness #raredisease #chronicpain #invisibleillness #disability #dynamicdisability #EDS #mentalhealth #healthmeme #memes

Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

Which speaks more to you, intuitive or mindful eating?

#BlogPost #GutHealth #Intuitive #Mindful #ChineseMedicine #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #SelfCare 💕 #Wellness

Avoid Cipro! or Antibiotics From Fluoroquinolone Family if You Have EDS Avoid Cipro!- I'm dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have EDS or not, diagnosed or not) to AVOID all antibiotics from the fluoroquinolone or "quin"…

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile:

ohtwist.com/avoid-cipro

#EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid

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

buff.ly/SOlLwKE

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

The Languages of Ehlers-Danlos Syndromes, MCAS, and POTS: Words Count How do you articulate your experience?              Yes, this is a loa…

What language do you speak when you speak of yourself as a person living with EDS?

#BlogPost #Language #SpeakYourTruth #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare 💕 #Wellness

If you have #SevereME, like me, you are valuable however and whenever you can show up

I’ve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, can’t always do it, but everyone is grateful for these spaces no one else provides

a monkey holding a microphone with the words never give advice unless asked below it Alt: a monkey holding a microphone with the words reading "never give advice unless asked"

Can we make this GIF the national spoonie mascot? 😁

#LongCovid #Fibromyalgia #pwME #MECFS #EDS #Lupus #ChronicPain #ChronicIllness #BrainFog #Disability #Disabled