#hEDS is an active hashtag on Bluesky. In the last 30 days, 40 people shared 109 posts with it — around 4 a day. Activity is down 21% versus the previous week, peaking on Jul 16 with 8 posts.

Posts with #hEDS

Beth Swanson

@write4chocolate.bsky.social

over 1 year ago

So many people sharing stories about denials from their health insurance company this week. Here’s ours. www.huffpost.com/entry/br…. #healthcare #healthinsuranace #cigna #UHC #CEO #POTS #hEDS #CCI #BCBS #Chronicillness

www.huffpost.com

My Daughter Desperately Needs Brain Surgery. Our Insurance Company's Response Has Been Shocking.

"The insurance company has an army of people who are very concerned about paperwork and precise wording ... My kindness and patience has shifted to fury."

45 213 453

Chronic Illness Humor

@chronicillness.bsky.social

over 1 year ago

#eds #ehlersdanlos #heds

a bunch of skeletons, all the same (gay, straight, religious, atheist) and then the last skeleton is all wonky and it's labeled 'Ehlers Danlos')

9 24 230

Chronic Illness Humor

@chronicillness.bsky.social

over 1 year ago

#eds #heds #edsmemes

DOCTOR: you can't dislocate your hips. that's impossible

EDS PATIENT: bro, hold my gatorade

17 17 169

DrChronically M.D.

@drchronically.bsky.social

5 months ago

In der #Praxis habe ich den Satz „Das kann nicht sein!“ gestrichen. Erkrankungen wie #MECFS, #hEDS, #HIT, #MCAS, #MCS, #FQAD, #PoTS und #SFN haben mich rasch eines besseren belehrt!

9 22 128

Michael Stingl

@neurostingl.bsky.social

5 months ago

Und siehe da, diese Studie zeigt tatsächlich, dass ein häufiges "das kann es nicht geben", nämlich eine von Menschen mit #hEDS oft berichtete verminderte Wirkung von Lokalanästhetika, durchaus ein reales Phänomen ist. rapm.bmj.com/content/earl...

rapm.bmj.com

Patients with Ehlers-Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-over clinical trial

Background The Ehlers-Danlos syndromes (EDS) are a collection of heritable connective tissue disorders. Local anesthetic resistance is commonly reported by patients with EDS, but there is little clini...

5 37 113

Daniel Swain

@weatherwest.bsky.social

about 1 year ago

Since it's May (almost missed it!), it's once again time for my annual thread on chronic medical conditions from my perspective as an informed patient & also professional navigator of complexity as a scientist-communicator, albeit one outside the biomedical space. [Thread!] #hEDS

2 24 105

Chronic Illness Humor

@chronicillness.bsky.social

over 1 year ago

#dislocation #heds #eds

fascinated by how 'dislocate' seems to be a word used almost exclusively to refer to the misalignment of bodies, or parts of the body, from their proper place. It's distinctly anatomical. you don't say 'i dislocated my keys' for instance, even though that's technically a correct and coherent sentence.

on the other hand, it would be really funny to say 'i misplaced my shoulder' to announce a devastating injury

it went that way [finger pointing emoji]

5 19 105

Chronic Illness Humor

@chronicillness.bsky.social

over 1 year ago

on my Etsy store [ www.etsy.com/shop/Chronic... ] and RB [ www.redbubble.com/shop/ap…. ] #eds #heds #hypermobility

I put the disco in disconnecting my joints black t-shirt with white lettering and sparkles around the word disco

Mybodyistryingtokillme.com
[funny chronic illness store]

2 9 103

OhTWIST

@ohtwist.bsky.social

over 1 year ago

Hello blue peeps - I've just gone through the wormhole and signed up here on the sky app. Bear with me as I slowly acclimate. I also don't multitask well! 😜 But hi! I post all things #EDS #HSD #hEDS #NEISvoid #MCAS #MCD #POTS #Dysatuonomia etc.

12 9 86

Edith

@edithraphaela.bsky.social

about 1 year ago

Hi mein Name ist Edith und ich möcht doch nur eine medizinische Person die sich in oder um #Hamburg mit #hEDS auskennt und das gegebenenfalls diagnostizieren kann. Zahl auch privat, gerne teilen. 😭🙌 #EDS

5 76 76

Daniel Swain

@weatherwest.bsky.social

about 1 year ago

BTW, for those interested in a deeper dive into #neuroimmune axis disorders, this timely new overview paper by @lauraapace.bsky.social et al. (2025) is a great starting point from a leading global expert on both science and clinical side. #hEDS #MECFS #LongCovid link.springer.com/article….

link.springer.com

The Neuroimmune Axis in Gastrointestinal Disorders – An Underrecognized Problem - Current Gastroenterology Reports

Purpose of Review We present an introduction to the neuroimmune axis with a focus on the gastrointestinal system, its role in numerous chronic multisystem disorders, and emerging tools and therapies t...

Daniel Swain @weatherwest.bsky.social

It turns out there is evidence that faulty connective tissues (& associated dysfunction in extracellular matrix) can actually CAUSE immune system dysfunction, but that the reverse is also true! There are more than a few innovative biomed research groups working on this right now.

2 9 76

It's ME(Jaime)

@exceedhergrasp1.bsky.social

4 months ago

Did you know that ~70% of first-year medical students use Anki flashcards to study for their medical exams? We created an Anki flashcard deck for infection-associated chronic illnesses, including #MECFS, #LongCOVID, #POTS, #MCAS, #hEDS, & more. Great convo & links! - www.reddit.com/r/medicalsch...

www.reddit.com

From the medicalschoolanki community on Reddit: New deck for infection-associated chronic conditions (IACCs)

Explore this post and more from the medicalschoolanki community

It's ME(Jaime) @exceedhergrasp1.bsky.social

4. Anki Flashcards (me + @erinmarilee.bsky.social, assistance from @grachstephanie.bsky.social & @jencurtinmd.bsky.social) Flashcards for med students on infection-associated chronic illness #MECFS, #LongCOVID, #POTS, #hEDS, #MCAS & more. Recommended by CDC 🧵 millionsmissing.meaction.net/teachME/

millionsmissing.meaction.net

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