#eds — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #eds, aggregated by home.social.
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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
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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
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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
-
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
-
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
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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:
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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:
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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:
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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:
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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:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
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:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
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:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
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:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
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:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
This is a terrible article.
“Why do Gen Z females, apparently unlike every generation before them, have strangely unstable bodies that intermittently require support?
“When you dig into their explanations, a few officially medical-sounding words tend to recur: postural tachycardia, joint hypermobility, fibromyalgia, chronic fatigue. #EDS #POTS #EhlersDanlos
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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 -
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 -
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 -
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 -
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/Stk5jMtlBSopossibly of interest to people with #EhlersDanlos and #CraniocervicalInstability
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Naples woman discovers sleep position linked to multiple strokes | Gulf Coast News
20 Feb 2026
https://youtu.be/Stk5jMtlBSopossibly of interest to people with #EhlersDanlos and #CraniocervicalInstability
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Naples woman discovers sleep position linked to multiple strokes | Gulf Coast News
20 Feb 2026
https://youtu.be/Stk5jMtlBSopossibly of interest to people with #EhlersDanlos and #CraniocervicalInstability
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Naples woman discovers sleep position linked to multiple strokes | Gulf Coast News
20 Feb 2026
https://youtu.be/Stk5jMtlBSopossibly of interest to people with #EhlersDanlos and #CraniocervicalInstability
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Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1287295
This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!
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Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1287295
This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!
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Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1287295
This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!
-
Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1287295
This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!
-
Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC
https://europepmc.org/article/PPR/PPR1287295
This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!
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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
ping @heyrochelle on the very slim chance that you are unaware.
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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
ping @heyrochelle on the very slim chance that you are unaware.
-
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
ping @heyrochelle on the very slim chance that you are unaware.
-
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
ping @heyrochelle on the very slim chance that you are unaware.
-
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
ping @heyrochelle on the very slim chance that you are unaware.
-
2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*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!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*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!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*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!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*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!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*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!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
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.
-
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.
-
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.
-
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.
-
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.
-
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
-
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
-
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
-
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
-
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
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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!
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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!
-
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!
-
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!
-
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!
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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 -
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 -
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 -
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 -
I'm so deeply sorry and embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #chronicallyill #crowdfund #emergencycrowdfund #chiari #tetheredcord #IMSORRYIHATETHIS
RE: https://plasmatrap.com/notes/aoctlai1vp -
I'm so deeply sorry and embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #chronicallyill #crowdfund #emergencycrowdfund #chiari #tetheredcord #IMSORRYIHATETHIS
RE: https://plasmatrap.com/notes/aoctlai1vp