spiegelmamaRE: https://mastodon.social/@czds/116707089342827924
Oh goodie. Another health disaster that might spring from my lousy connective tissue. 😕 #hypermobileEhlersDanlosSyndrome #hEDS #hypermobility
EdibleFuchsiaToday I also learned about the Overlapping Illness Alliance in the UK:
"The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions."
It is so validating to know that someone is putting these conditions together when you suffer from a few of them.
#MECFS
#POTS
#EhlersDanlossSyndrome
#hypermobility
#LongCovid
#MCAS
🌷 marz 🌷Meditators with EDS/Hypermobility
In what position have you gotten your deepest meditative states?
If another pose, please reply with it.
Feel free to boost for reach.
Crossed Legs (Lotus, Half Lotus, etc)
Kneeling (Zazen, stool, etc)
Seated in Chair
Reclining or Laying Down
Poll ended at .
Julia“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!
Articles about Nevra:
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
biyokeaPour 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
Irene (she/they, Sir/Mr.)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
W_Dräger 🦉
Morgan ⚧️Any guitar* players on fedi with EDS or painful hypermobility? Do y'all have advice on how to cause less pain when I practice/perform? So far I've been switching sides, which seems to help with the long-term pain of always playing "right-handed," but I still end up in pain on whichever side of my neck/shoulders the fretboard was on.
*Or bass guitar, banjo, pretty much anything on a guitar strap
#askFedi #duckDuckFedi #musician #disabledMusician #guitar #hEDS #eds #hypermobility #chronicPain
Daisee (she/her)
Strfnurfnok but in this bold new age of biometric logins, no one's talking about accessibility for those of us with weak-ass fingerprints. #hypermobility #teamWonkyCollagen #mostlyKidding