#hypermobile-ehlers-danlos-syndrome — Public Fediverse posts

https://www.europesays.com/it/654035/ Sei sempre stato “snodato”? Quando quella strana flessibilità può diventare un problema di salute #BbcNews #EhlersDanlos #GeneReviews #Health #HypermobileEhlersDanlosSyndrome #IpermobilitàArticolare #IT #Italia #Italy #NCBIBookshelf #nhs #Salute #SindromeDiEhlersDanlos #TestGenetici #TheEhlersDanlosSociety

https://www.youtube.com/watch?v=56O_fec3OMo

vidéo de santé publique je pense + déculpabilisation des personnes handi par rapport à avoir une clim

#autisme #tdah #fibromyalgie #trisomie #polyhandicape #schizophrénie #depression #troublesanxieux #trauma #antipsychotiques #LongCovid #diabète #hypermobileEhlersDanlosSyndrome

@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

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

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

Hey. Help us pay for my new wheelchair? I'm desperately hoping the issues with my current chair are that it's old and battered and possibly needs more in repairs than would be worth it (it's better than NOT having one, don't get me wrong...). But $1,100 (rounded slightly up) is a dear price even if cheaper than we'd ever get anything custom.

We're hoping to pay it off in chunks, since we used a credit card, but. The assurance of *having* the money to pay it off would be awesome - and y'all can say you helped buy my chair! Win/win!

Current goal is at $50/$100

(Unless that's changed literally while I've been typing 🤣)

My cashapp is $Inoru, spouse's CashApp is $ceahhettan and his
Venmo is @/californiummm; ask them for paypal/zelle. Comment wheelchair or a Blue wheelchair emoji with specifically-for-this donations! Any amount helps and I/we appreciate!

<*wiggles in New Wheelchair excitement*>

#crowdfund #crowdfunding #transcrowdfund #transcrowdfunding #disabledcrowdfund #disabledcrowdfunding #deafcrowdfund #deafcrowdfunding #helpfolkslive #HelpFolksLive2025 #mutualaid #MutualAidRequest #moneyhelp #ambulatorywheelchairuser #hEDS #hypermobility #hypermobileEhlersDanlosSyndrome #wheelchairuser #powerchair #wheelchaircrowdfunding #powerchaircrowdfunding #IsThisEnoughHashtags #hashtag

via @camilla

https://kolektiva.social/@camilla/113783600650227501

New research suggests genetic identification for #eHDS -- #MTHFR.

https://scitechdaily.com/bending-over-backwards-vitamin-deficiencys-surprising-role-in-double-jointedness-and-eds/

I have known since 2008 that I have this mutation because it caused such difficulty in my sister's pregnancy. To know that this may be the new diagnostic tool for #HypermobileEhlersDanlosSyndrome gives me great hope.

#HSD #Genetics #EhlersDanlosSyndrome #ChronicPain #MyEDSChallenge #MyHSDChallenge #TogetherWeDazzle #ZebraStrong

I’ve diligently worked my entire life to cultivate the grace with which I was not born. Only in granting myself compassion did I truly find it.

Learn more about my journey with #EhlersDanlos and #hypermobility in today’s @Huffingtonpost. I hope it helps someone else find an answer and perhaps hope for the future.

https://www.huffpost.com/entry/broken-bones-ehlers-danlos-syndrome_n_644052d2e4b039ec4e7c66c2

#EhlersDanlosSyndrome #HypermobileEhlersDanlosSyndrome #ChronicPain

Hi all, i’m not exactly new here, but i haven’t used this site much due to me finding it difficult to work out, but with the recent situation on twitter i thought i would give it a go!
So to introduce myself - i’m Haiden, i’m 21 and i’m #Autistic , i also have #ADHD , #Bipolar , #OCD and #hEDS ( #hypermobileehlersdanlossyndrome )
So i will be discussing those things often - i’m also a lover of animals, crafts etc.

#chronicallyill #NEISvoid #AuDHD