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#eds — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #eds, aggregated by home.social.

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  1. 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

  2. RE: mastodon.social/@NichtGenesen/

    #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

  3. #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:

    madevisible.podbean.com/e/38-p

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

  4. 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

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

    possibly of interest to people with #EhlersDanlos and #CraniocervicalInstability

    #Stroke #CervicalSpine #CCI #EDS

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

    europepmc.org/article/PPR/PPR1

    #hEDS #EDS #POTS #MCAS

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

  7. 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

    rnz.co.nz/programmes/all-in-he

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

    #EDS #EhrlerDanlos #EhrlerDanlosSyndrome

  8. 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

  9. 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.

    en.wikipedia.org/wiki/Orthosta

    #EDS #chronicallyIll

  10. 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

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

    europepmc.org/article/MED/4239

    #EDS #POTS

  12. 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?

  13. 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):

    youtu.be/vLar9uhx0NE

    1/2

  14. 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

  15. CW: diy cannabis coffee

    sliced up a cannatonic strain (thc 0-1%, cbd 12-20%) cause vaping makes my mouth feel weird and toking makes brain bad

    it took maybe 5 min for this to make my coffy stinky. :blobcat_glare: i have had one sip and shall now wait several days for effects

    #cannabis #longCOVID #EhlersDanlos #EDS #ChronicIllness #disability

  16. 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

  17. 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

  18. 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 vmpgenetics.com/

  19. 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!