#hypermobility — Public Fediverse posts

Hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: patient experiences, disability and implications for rehabilitation. - Abstract - Europe PMC

https://europepmc.org/article/MED/42298945

#EhlersDanlos #Hypermobility

Hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: patient experiences, disability and implications for rehabilitation. - Abstract - Europe PMC

https://europepmc.org/article/MED/42298945

#EhlersDanlos #Hypermobility

@spiegelmama
On my dad's side of the family nearly every male died of an aneurysm or had an aneurysm that was found when they died. This was the biggest determining factor that led to my diagnosis (I was diagnosed unspecified EDS with the old criteria). It's important to remember, however, that EDS is a spectrum disorder and unless you have family history or have vascular EDS (if you live beyond 40 you almost certainty don't have vEDS) I wouldn't freak out. Checking is always a good idea though with ultrasound, CT-A, etc just in case.

#hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

@spiegelmama
On my dad's side of the family nearly every male died of an aneurysm or had an aneurysm that was found when they died. This was the biggest determining factor that led to my diagnosis (I was diagnosed unspecified EDS with the old criteria). It's important to remember, however, that EDS is a spectrum disorder and unless you have family history or have vascular EDS (if you live beyond 40 you almost certainty don't have vEDS) I wouldn't freak out. Checking is always a good idea though with ultrasound, CT-A, etc just in case.

#hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

RE: https://mastodon.social/@czds/116707089342827924

Oh goodie. Another health disaster that might spring from my lousy connective tissue. 😕 #hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

RE: https://mastodon.social/@czds/116707089342827924

Oh goodie. Another health disaster that might spring from my lousy connective tissue. 😕 #hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

“People have no idea what Severe ME is like” – Nevra, Pakistan

Unfortunately, Nevra's condition keeps getting worse. If you can, please support her GoFundMe campaign.
Thanks!

🩵 https://gofund.me/919653851

Articles about Nevra:

December 2025
https://thesicktimes.org/2025/12/15/medically-neglected-and-structurally-erased-international-network-appeals-for-me-advocate-nevra-elis/

November 2024
https://www.thecanary.co/global/world-analysis/2024/11/07/nevra-mecfs-pakistan/

April 2024
https://worldmealliance.org/2024/04/people-have-no-idea-what-severe-me-is-like-nevra-pakistan/

#GlobalVoiceForME
#Pakistan
#SevereME
#MECFS
#disability
#POTS
#MCAS
#PMDD
#OCD
#Hypermobility
#endometriosis
#TMJdisorder
#CCI
#domesticviolence

“People have no idea what Severe ME is like” – Nevra, Pakistan

Unfortunately, Nevra's condition keeps getting worse. If you can, please support her GoFundMe campaign.
Thanks!

🩵 https://gofund.me/919653851

Articles about Nevra:

December 2025
https://thesicktimes.org/2025/12/15/medically-neglected-and-structurally-erased-international-network-appeals-for-me-advocate-nevra-elis/

November 2024
https://www.thecanary.co/global/world-analysis/2024/11/07/nevra-mecfs-pakistan/

April 2024
https://worldmealliance.org/2024/04/people-have-no-idea-what-severe-me-is-like-nevra-pakistan/

#GlobalVoiceForME
#Pakistan
#SevereME
#MECFS
#disability
#POTS
#MCAS
#PMDD
#OCD
#Hypermobility
#endometriosis
#TMJdisorder
#CCI
#domesticviolence

Pour commencer par un truc intéressant : étude[1] rétrospective sur des dossiers médicaux qui cherche à évaluer la prévalence de SEDh/HSD (syndrôme d'Ehlers-Danlos type hypermobile/trouble du spectre de l'hypermobilité) chez les personnes trans/nb. Elle trouve :

• prévalence de 2.62% chez les personnes transmasc
• prévalence de 1% chez les personnes transfem
• pas de différence significative dans la prévalence vis-à-vis de la prise ou non de TH

La même étude trouve une prévalence de 0.16% chez les femmes cis et 0.04% chez les hommes cis ; ça fait presque 20 fois plus de chances d'avoir un SED chez les personnes trans (OR 18.45).

Ça recoupe quelques autres études qui montrent une prévalence importante de SEDh chez les personnes trans :

• étude[2] dans un centre médical prescrivant des TH qui trouve une prévalence de SEDh de 2.7% chez des personnes trans
• étude[3] dans un centre médical trouvant une prévalence de SED de 2.6% chez des personnes trans ayant eu une opération de transition (72% SEDh, le reste pas spécifié ; ~70% transmasc). Pas de surrisque de complications postop ou de réopérations dans ce groupe, pour principalement des mammecs, qqs orchis, et d'autres opés.
• étude[4] dans un centre pédiatrique de prise en charge du SED trouvant une prévalence de dysphorie de genre de 17% chez des ados avec un diag de SED(h)/HSD

[1] : Prevalence of Hypermobile Ehlers-Danlos Syndrome in Transgender and Gender Diverse Individuals: A Retrospective Cohort Study. Tabernacki T et al., 2025. https://doi.org/10.1177/23258292251382250

[2] : The prevalence of hypermobile Ehlers–Danlos syndrome at a gender-affirming primary care clinic. Stein T et al., 2025. https://doi.org/10.1177/20503121251315021

[3] : Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience. Najafian A, 2022. https://doi.org/10.20517/2347-9264.2021.89

[4] : Gender dysphoria in adolescents with Ehlers–Danlos syndrome. Jones JT et al., 2022. https://doi.org/10.1177/20503121221146074

#EDS #hEDS #trans #hypermobility #hypermobileEhlersDanlosSyndrome #HSD

Pour commencer par un truc intéressant : étude[1] rétrospective sur des dossiers médicaux qui cherche à évaluer la prévalence de SEDh/HSD (syndrôme d'Ehlers-Danlos type hypermobile/trouble du spectre de l'hypermobilité) chez les personnes trans/nb. Elle trouve :

• prévalence de 2.62% chez les personnes transmasc
• prévalence de 1% chez les personnes transfem
• pas de différence significative dans la prévalence vis-à-vis de la prise ou non de TH

La même étude trouve une prévalence de 0.16% chez les femmes cis et 0.04% chez les hommes cis ; ça fait presque 20 fois plus de chances d'avoir un SED chez les personnes trans (OR 18.45).

Ça recoupe quelques autres études qui montrent une prévalence importante de SEDh chez les personnes trans :

• étude[2] dans un centre médical prescrivant des TH qui trouve une prévalence de SEDh de 2.7% chez des personnes trans
• étude[3] dans un centre médical trouvant une prévalence de SED de 2.6% chez des personnes trans ayant eu une opération de transition (72% SEDh, le reste pas spécifié ; ~70% transmasc). Pas de surrisque de complications postop ou de réopérations dans ce groupe, pour principalement des mammecs, qqs orchis, et d'autres opés.
• étude[4] dans un centre pédiatrique de prise en charge du SED trouvant une prévalence de dysphorie de genre de 17% chez des ados avec un diag de SED(h)/HSD

[1] : Prevalence of Hypermobile Ehlers-Danlos Syndrome in Transgender and Gender Diverse Individuals: A Retrospective Cohort Study. Tabernacki T et al., 2025. https://doi.org/10.1177/23258292251382250

[2] : The prevalence of hypermobile Ehlers–Danlos syndrome at a gender-affirming primary care clinic. Stein T et al., 2025. https://doi.org/10.1177/20503121251315021

[3] : Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience. Najafian A, 2022. https://doi.org/10.20517/2347-9264.2021.89

[4] : Gender dysphoria in adolescents with Ehlers–Danlos syndrome. Jones JT et al., 2022. https://doi.org/10.1177/20503121221146074

#EDS #hEDS #trans #hypermobility #hypermobileEhlersDanlosSyndrome #HSD

Just realized the weight ive recently put on might actually be muscle??? Crying bc no other reaction feels to quite fit this emotion im experiencing/failing to name

I havent been trying to gain or lose weight, just doing range of motion and flexibility stuff plus the odd dance movement with a fancy French name... i have a few what feel to me both modest and extravagant dance aspirations, so in some ways this development makes sense, its just so incredibly alien to me to actually detect progress toward those goals!!

For context: ive been #chronicallyill since at least 2012, and was fully bedridden for at least seven of those years. Im still rather severely mentally ill but my body has been doing somewhat better lately (ongoing problems notwithstanding), for which im endlessly grateful and going to make the most of while I can, whatever that ends up looking like

Random snaps my partner took of me the other day, for attention and bc i look fantastic 🩷

#ChronicFatigue #ChronicPain #mecfs #fibromyalgia #hypermobility

Just realized the weight ive recently put on might actually be muscle??? Crying bc no other reaction feels to quite fit this emotion im experiencing/failing to name

I havent been trying to gain or lose weight, just doing range of motion and flexibility stuff plus the odd dance movement with a fancy French name... i have a few what feel to me both modest and extravagant dance aspirations, so in some ways this development makes sense, its just so incredibly alien to me to actually detect progress toward those goals!!

For context: ive been #chronicallyill since at least 2012, and was fully bedridden for at least seven of those years. Im still rather severely mentally ill but my body has been doing somewhat better lately (ongoing problems notwithstanding), for which im endlessly grateful and going to make the most of while I can, whatever that ends up looking like

Random snaps my partner took of me the other day, for attention and bc i look fantastic 🩷

#ChronicFatigue #ChronicPain #mecfs #fibromyalgia #hypermobility

As a #disabled #gardener…it is really frustrating when the weight of tools is not listed online when purchasing ⛏️ :meow_cowboy:

#gardening #HEDS #fibromyalgia #hypermobility #badback

#3GoodThings

1. Shoes
2. Crutches
3. Walking

#Walking #Mobility #Hypermobility

#3GoodThings

1. Shoes
2. Crutches
3. Walking

#Walking #Mobility #Hypermobility

"Let me open up my diagnosis box and see if I have something that explains why this situation went this way."

#Autism #ADHD #audhd #neurodivergent #CFS #lupus #hypermobility

"Let me open up my diagnosis box and see if I have something that explains why this situation went this way."

#Autism #ADHD #audhd #neurodivergent #CFS #lupus #hypermobility

The packaging on my mouthwash was so frustrating for my #hEDS that I just gave up and used an old travel bottle :meow_evilknife:

#hypermobility #disabled

Following up with tags: I'm trying to learn more about intimacy with #heds, #hypermobility, and #disability more broadly. Any and all resources appreciated!

Following up with tags: I'm trying to learn more about intimacy with #heds, #hypermobility, and #disability more broadly. Any and all resources appreciated!

Anyone have an office chair they can sit in for prolonged periods (ideally more than an hour)? Also open to non-conventional options. My current option really aggravates my lumbar pain. :meow_pain:

#hEDS #ehlersdanlos #hypermobility #disabled #disability #chronicillness #chronicpain

Anyone have an office chair they can sit in for prolonged periods (ideally more than an hour)? Also open to non-conventional options. My current option really aggravates my lumbar pain. :meow_pain:

#hEDS #ehlersdanlos #hypermobility #disabled #disability #chronicillness #chronicpain

I'm basically a hot mess, emphasis on hot and emphasis on mess.

Really wish somebody had helped me figure this out 30 years ago.

#EDS
#hEDS
#EhlersDanlos
#hypermobility
#BendyBody
#BendyGirl
#ChronicIllness
#ChronicPain
#bendy
#ouch

2/2

I'm basically a hot mess, emphasis on hot and emphasis on mess.

Really wish somebody had helped me figure this out 30 years ago.

#EDS
#hEDS
#EhlersDanlos
#hypermobility
#BendyBody
#BendyGirl
#ChronicIllness
#ChronicPain
#bendy
#ouch

2/2

I recently discovered that I'm probably hypermobile. Apparently most people can't put their hands in prayer position behind their back? Anyway, towards the end of this interview with Sophie Macfie (about 5 minutes from the end), she mentions that many neurodivergent people frequently cross our legs when sitting (which I do). A new theory on why relates to hypermobility, and whether that makes it uncomfortable to sit "normally";

https://www.hidden20.org/podcast/sophsplantkitchen

#podcasts #TheHidden20% #hypermobility

I recently discovered that I'm probably hypermobile. Apparently most people can't put their hands in prayer position behind their back? Anyway, towards the end of this interview with Sophie Macfie (about 5 minutes from the end), she mentions that many neurodivergent people frequently cross our legs when sitting (which I do). A new theory on why relates to hypermobility, and whether that makes it uncomfortable to sit "normally";

https://www.hidden20.org/podcast/sophsplantkitchen

#podcasts #TheHidden20% #hypermobility

Symptom: Mast Cell Itching

https://www.illmarks.com/symptom-mast-cell-itching/

#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs

Symptom: Mast Cell Itching

https://www.illmarks.com/symptom-mast-cell-itching/

#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs

Diagnosis: Hypermobile Ehlers-Danlos Syndrome

After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

Final close up.

https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

Diagnosis: Hypermobile Ehlers-Danlos Syndrome

After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

Final close up.

https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

I need some advice on #hypermobility. Is there anyone here I can chat with. Thanks

Symptom: Arthralgia and Arthritis

Rejected (not great for professional use) options that I’ll share with you because I love you but don’t tell my PCP about any of these, k?

• Notorious Self-Diagnoser
• Health Insurance Reform Enthusiast
• Creatinine-level Checking Creative
• Medical System Subverter
• Bruh They’re a Totally Sick Designer
• Mario’s Brother Appreciator

https://www.illmarks.com/symptom-arthralgia-and-arthritis-and-a-poll/

#art #arthralgia #autoimmune #bodyHorror #bodyMapping #chronicIllness #eds #heds #hsd #hypermobility #hypermobilityspectrum #longCovid #longcovid #mastCell #mastcell #mcas #medicalArt #MillionsMissing #osteoarthritis #pwLC #pwme #spondylitis #symptom #symptomVisualization #symptomtracking

@actuallyautistic

New Treatment Guidance Issued for Challenging Overlap of Hypermobility Syndromes and GI Symptoms

https://www.medscape.com/viewarticle/new-treatment-guidance-issued-challenging-overlap-2025a1000ljm

#EDS #MCAS #hypermobility