Show threadbiyokea2d ago

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 THLa 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

Sky3d ago

I was told everything was removed. It wasn’t.
What was left behind cost me months of answers.
This is what medical gaslighting looks like. 🖤
linktr.ee/skylanarissa
#ChronicIllness #Disability #EDS #EhlersDanlosSyndrom #CRPS #DRGStimulator #MedicalNegligence #MedicalGaslighting

https://dreamingofdragonscom.wordpress.com/2026/04/04/saturday-health-update-the-drg-saga-medical-gaslighting-and-the-cost-of-being-left-behind/

Saturday Health Update: The DRG Saga, Medical Gaslighting, and the Cost of Being Left Behind

I was told everything was removed. It wasn’t. What was left behind turned into months without answers, seizures without warning, and a surgery I should never have needed. This is what happens when …

The Crippled Cryptid.
Morgan ⚧️Mar 26

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

Emily JohnsonMar 25

If you have #SevereME, like me, you are valuable however and whenever you can show up

I’ve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, can’t always do it, but everyone is grateful for these spaces no one else provides

JuliaMar 22

This is my favourite podcast on complex chronic conditions so far:

🎙️Make Visible: Chronic Illness Explored

Homepage:
https://madevisible.podbean.com/

Themes included:

ME/CFS
Long Covid
Ehlers Danlos ( #EDS )
#Fibromyalgia
#POTS
Mast Cell Activation Syndrome ( #MCAS )
Chronic Lyme
Infection Associated Chronic Conditions ( #IACC ) and more.

#mecfs
#postcovid
#LongCovid
#postvac
#podcast
#makevisible

Make Visible: Chronic Illness Explored | Visible with Emily Kate Stephens

Shining a light on invisible illness.<br /><br />Emily Kate Stephens, journalist and Long Covid sufferer, discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals.  Including ME/CFS, Long Covid, E...

Knee NeartMar 22

#3goodThings

1. Day 4 of doing a little bit of journaling. Largely because #EDS injuries have led to near complete muscle wastage in my hands (I've been lifting with my fists clenched to protect my wrists and elbow for a couple of years while waiting for surgery), so getting back into journalling manually for that reason, but also, wow, my head feels clearer and more capable of planning and organising already

2. Made plans to meet my bestie next month. Gonna mean hauling the family to Cheviot but worth it. My whole family loves my bestie lol, it's so hard having to share someone so fucking cool

3. Got Bláithín a 3d pen for her birthday and got to use it for the first time today. I made a bat! Pretty cool tech, I had a lot of fun! Want to try something bigger and rounder next time but I don't want to waste her pretty coloured stuff.

Emily JohnsonMar 22

I Tried to Vacuum and My Head Drifted Off My Neck Too Much: The #AAO Story

When You Can’t Roll Your Shoulders Back and Shrug Your Neck and Head into Proper Alignment Anymore: The #CCI Story

Craniosacral Therapy Gone Awry: The #AAI Story

An #EDS horror trilogy

SkyMar 20

Red Zone week.
Grief. Surgery news. Soup magic.
Luna Bean is on duty 🐾
You made it through the week. That counts.
linktr.ee/skylanarissa
#ServiceDog #ChronicIllness #Disability #EDS #Autoimmunedisease

https://dreamingofdragonscom.wordpress.com/2026/03/20/friday-takeover-red-zone-weeks-soup-magic-and-supervising-big-feelings/

Friday Takeover: Red Zone Weeks, Soup Magic, and Supervising Big Feelings

A red zone week. A fallen tree. A grief that doesn’t knock before it settles in. From Bed Jail™ to soup magic, Luna Bean reports on survival, softness, and staying—especially when everything feels …

The Crippled Cryptid.
Protyus A. GendherMar 20

Instead of any behavior that indicated that I measured up, everyone would react with utter shock and surprise every year when I finally reached the test I could pass. Nobody ever questioned what might be going on in a body that can't run a mile, but is very stretchy. #eds #zebra #survivor #trauma

https://survivorliteracy.com/2026/03/19/19-presidential-fitness-test-4/

19) Presidential Fitness Test

The Presidential Fitness Test, established in the 1950s to assess youth fitness in comparison to European peers, emphasized military-style performance. Over the years, it became associated with bod…

Survivor Literacy
starryeyesMar 19

I'm really struggling with chronic pain due to my genetic disorders, am not able to afford meds, & I'm *not* okay.

If anyone can help, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $70. I hate asking for help, I feel like a jerk, but I don't have another option.

PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla

#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled