#eds — Public Fediverse posts

Hey, digital artists and especially digital artists with #EDS #hypermobility!

What wrist braces do you recommend? I’ve had a drawing tablet for like a month, and my rheumatologist confirmed today that my wrist arthritis is much more noticeable

* iPad mini, trying diff grips for pencil too and open to recs

RE: https://mastodon.social/@NichtGenesen/117089430124859888

#DieNeueNorm , #FrankfurterRundschau & #TheGlobalDisabilityNewsNetwork suchen
Berichte von #Eltern medizinisch komplex erkrankter Kinder (z.B. #EDS #MECFS #LongCovid #PostCovid , seltenen Schmerzsyndromen u.a.), die fälschlicherweise verdächtigt werden, ihr Kind absichtlich krank zu machen („Münchausen by Proxy“).

Mehr Infos auf der Website (s.u.), bei Fragen:

[email protected]

#nichtgenesen
#nichtgenesenkids

#chronicillness
#disability

Using aids and maybe looking/acting different than others expect:

'I don't really care anymore what people think of me.'

'Well, better look silly than feel terrible.'

'I quite enjoy being weird. (..) I hope that everyone can just go out there and be their own weird self after this conversation.'

#physicaltherapy tools to reduce crashes and improve quality of life for:

https://madevisible.podbean.com/e/38-pacing-is-power-pots-pem-eds-mcas-strategies-with-dr-clayton-powers/

#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness

Spending the summer traveling has been a good demonstration of how much my EDS body benefits from the stability of san diego. Nothing like a good reminder of what I'm paying for out there!
#disability #travel #EDS #CCCAdVANture2026

Naples woman discovers sleep position linked to multiple strokes | Gulf Coast News
20 Feb 2026
https://youtu.be/Stk5jMtlBSo

possibly of interest to people with #EhlersDanlos and #CraniocervicalInstability

#Stroke #CervicalSpine #CCI #EDS

Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC

https://europepmc.org/article/PPR/PPR1287295

#hEDS #EDS #POTS #MCAS

This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!

New Zealand's health authorities, Te Whatu Ora, have their fingers in their ears while they scream LALALALALA pretending that Ehlers-Danlos Syndrome is beyond them.

This is a terrific series from RNZ on the problem.

All In Her Head: The Girl That Couldn't Eat, episode one

https://www.rnz.co.nz/programmes/all-in-her-head/story/2019044218/aihh-episode-one-the-girl-who-couldn-t-eat

ping @heyrochelle on the very slim chance that you are unaware.

#EDS #EhrlerDanlos #EhrlerDanlosSyndrome

*Known disability, it’s possible to be disabled or have infection risk factors you don’t know about.

I started this in December and only finished it last week. Crip time!

My disability impacts my proprioception… meaning I’m constantly bumping & banging into things.

A few weeks ago I developed a nasty foot infection, and two days ago I sliced open my hand cutting the gauze FOR the foot infection.

Chronic illness is no joke.

If I owe you a reply or an email, this is why I’m late.

My gauze paw is slowing me down!

PS… when dealing with chronic illness it’s important to have a well stocked first aid kit! Mine is a first aid bin… it’s one of those large underbed storage containers. Having instant access to emergency supplies is a necessary accommodation to improve quality of life.

#chronicillness #disability #eds #ehlersdanlossyndrome

Accidentally recreated a POTS* test by lying upside down to let my colon sort itself out. Completely crashed my metabolism. Ah well, preparations for a potential trip to the ER have been made, and now I hope the drops help resolve the prolapses instead.

https://en.wikipedia.org/wiki/Orthostatic_hypotension?wprov=sfla1

#EDS #chronicallyIll

Hey EDS frendos, anyone tried the Body Braid?

Potential client reached out with a YT video on how to make one and asked if I'd be able to. Looks doable, and now I'm just kinda curious if they work!

#hEDS #EDS

Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund

RE: https://plasmatrap.com/notes/aoctlai1vp

The co-existence of Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome: A systematic review of the literature. - Abstract - Europe PMC

https://europepmc.org/article/MED/42398445

#EDS #POTS

Hi #EDS peeps... I would like to try some splint rings for my distal finger joints, to keep them from hyperextending, but I have no clue how to go about finding the right style or size of ring. Anybody got any advice for someone just trying this out?

John Ferman, who founded of Chronic Pain Partners/EDS Awareness in 2011, passed away November 2025

EDS patient and filmmaker @karinasturm made this documentary short to honor John’s legacy of advocacy (in honor of his first wife, who passed away due to #EDS complications):

https://youtu.be/vLar9uhx0NE

1/2

I was diagnosed with #EDS 6 years after Chronic Pain Partners/EDS Awareness began

The resources John Ferman and others at Chronic Pain Partners/EDS Awareness shared were invaluable, especially in an era before social media made research, clinician and medical care info easier to find

Thank you 💜

2/2

Alan Levinovitz said #LongCovid is psychogenic then there is no such thing as LC yet was paid to write on long Covid for @Wired

He has written articles and a book with another book underway discrediting biophysical disabilities

Don’t believe bad actors

He said on Twitter he is critical of #EDS #MECFS patients who need to neurosurgeries

He is calling neurosurgeons who provide surgeries exploitative and labeling surgeries as dangerous

He has not engaged with expert sources correcting him

2/2

Reading an article on craniocervical instability in Ehlers-Danlos Syndrome, and its again connecting some symptoms logically, and it would be so nice if I had any kind of medical guidance. Instead, I have read scientific articles on my illness all the time to understand things.

I've had back pains since my youth. It's so fucking ridiculous that I always have to figure out everything myself.

#EDS #chronicallyIll

If you need an #EhlersDanlos #EDS geneticist expert, I recommend Dr Fran Kendall

She’s recommended by The EDS Society, Shes also a #Mito expert which many with EDS have, she does telehealth and takes insurance, does research, goes to the conferences etc https://www.vmpgenetics.com/

P.S. “My doctor/geneticist uses/is OK with me using Invitae”

Is your doctor an expert #EhlersDanlos geneticist recommended by The EDS Society? Are they authors on EDS consensus criteria papers?

If not, they may have limited to no #EDS experience or basic outdated med school learning — see an expert!