#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

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

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

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

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

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

#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

#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

#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

#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

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

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/Stk5jMtlBSo

possibly of interest to people with #EhlersDanlos and #CraniocervicalInstability

#Stroke #CervicalSpine #CCI #EDS

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

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

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!

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!

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!

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!

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

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

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

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

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!

*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!

*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!

*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!

*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

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

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

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

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

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

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

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

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

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

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

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

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

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