#eds — Public Fediverse posts

I'm so embarrassed and so sorry. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #spooniechat #fibromyalgia #chiarimalformation #tetheredcord #mutualaid

RE: https://plasmatrap.com/notes/amt3jiihdr

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Hej, jeśli ktoś z Was ma możliwość, pomożecie młodej osobie z wieloma chorobami przewlekłymi?
Znam ją z Instagrama, jest cudowna, ale ma wyjątkowo ciężko ❤️‍🩹
Napisała dzisiaj, że nie chce być statystyką. Nie będziesz, Ash. Nie będziesz szła sama, nigdy.

https://www.siepomaga.pl/natalka-mancewicz?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcARxedZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA81NjcwNjczNDMzNTI0MjcAAafbIyJMeExLjbCtdHr8naL5qQwZde0Xa4PVSPZN7fPLrcWJTZjvLjSfLo2xIg_aem_5NyNKtwwDOsT8M7KU0qbww

#mutualaid #autisticsolidarity #pomocwzajemna #opór #spoonie #chorobaprzewlekla #niepełnosprawność #pots #eds #pandas #mecfs #zapaleniemózgu #stomia #pozajelitowe #spektrumautyzmu #solidarność #zrzutka #zbiórka #ozn

Recently I had an outpatient procedure

I explained visceroptosis in #EDS, asked the tech if we could do upright tests, she was game to compare supine then seated results

Turns out a few medical papers exist saying this test should be done seated — medicine hasn’t caught up yet

Recently I had an outpatient procedure

I explained visceroptosis in #EDS, asked the tech if we could do upright tests, she was game to compare supine then seated results

Turns out a few medical papers exist saying this test should be done seated — medicine hasn’t caught up yet

Recently I had an outpatient procedure

I explained visceroptosis in #EDS, asked the tech if we could do upright tests, she was game to compare supine then seated results

Turns out a few medical papers exist saying this test should be done seated — medicine hasn’t caught up yet

Recently I had an outpatient procedure

I explained visceroptosis in #EDS, asked the tech if we could do upright tests, she was game to compare supine then seated results

Turns out a few medical papers exist saying this test should be done seated — medicine hasn’t caught up yet

All tests that can be done seated and standing (after supine tests) should be in #EDS and other connective tissue disorder/disease patients

Pretending widespread impacts of visceroptosis aren’t painful and don’t present other chronic disabling symptoms has gotten us nowhere

All tests that can be done seated and standing (after supine tests) should be in #EDS and other connective tissue disorder/disease patients

Pretending widespread impacts of visceroptosis aren’t painful and don’t present other chronic disabling symptoms has gotten us nowhere

All tests that can be done seated and standing (after supine tests) should be in #EDS and other connective tissue disorder/disease patients

Pretending widespread impacts of visceroptosis aren’t painful and don’t present other chronic disabling symptoms has gotten us nowhere

All tests that can be done seated and standing (after supine tests) should be in #EDS and other connective tissue disorder/disease patients

Pretending widespread impacts of visceroptosis aren’t painful and don’t present other chronic disabling symptoms has gotten us nowhere

So last Sunday, I stepped down wrong and lightly sprained my ankle. It was mostly fine, until yesterday, when I stepped down wrong again and completely wrecked it.

I’m now wearing an ankle brace, because I kept stepping down and hurting my ankle.

But the ankle brace means I limp more, which means…the knee on the opposite side is starting a slow dislocation. 🫠🫠🫠

The “cascading failure,” as I’ve called it in the past, has begun. 🫠🫠🫠

Fun with #EDS, y’all!!

So last Sunday, I stepped down wrong and lightly sprained my ankle. It was mostly fine, until yesterday, when I stepped down wrong again and completely wrecked it.

I’m now wearing an ankle brace, because I kept stepping down and hurting my ankle.

But the ankle brace means I limp more, which means…the knee on the opposite side is starting a slow dislocation. 🫠🫠🫠

The “cascading failure,” as I’ve called it in the past, has begun. 🫠🫠🫠

Fun with #EDS, y’all!!

So last Sunday, I stepped down wrong and lightly sprained my ankle. It was mostly fine, until yesterday, when I stepped down wrong again and completely wrecked it.

I’m now wearing an ankle brace, because I kept stepping down and hurting my ankle.

But the ankle brace means I limp more, which means…the knee on the opposite side is starting a slow dislocation. 🫠🫠🫠

The “cascading failure,” as I’ve called it in the past, has begun. 🫠🫠🫠

Fun with #EDS, y’all!!

So last Sunday, I stepped down wrong and lightly sprained my ankle. It was mostly fine, until yesterday, when I stepped down wrong again and completely wrecked it.

I’m now wearing an ankle brace, because I kept stepping down and hurting my ankle.

But the ankle brace means I limp more, which means…the knee on the opposite side is starting a slow dislocation. 🫠🫠🫠

The “cascading failure,” as I’ve called it in the past, has begun. 🫠🫠🫠

Fun with #EDS, y’all!!

So last Sunday, I stepped down wrong and lightly sprained my ankle. It was mostly fine, until yesterday, when I stepped down wrong again and completely wrecked it.

I’m now wearing an ankle brace, because I kept stepping down and hurting my ankle.

But the ankle brace means I limp more, which means…the knee on the opposite side is starting a slow dislocation. 🫠🫠🫠

The “cascading failure,” as I’ve called it in the past, has begun. 🫠🫠🫠

Fun with #EDS, y’all!!

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

Spoke to GP who says if my lungs don’t improve I’ll have no choice but to do a course of inhaled steroids.

I don’t tolerate steroids well ( #EDS) &…did I really need this? Trying my best not to tempt fate & sleep as much as possible… do the good illness things.

Don’t challenge fate.
Wear a mask.😷

#Covid
#LongCovid

I've been using compression knee brace sleeves for a while to help my pain, but received a McDavid x429 hinged knee brace yesterday. Let's just say the difference in my pain level and ease of walking resulted in ordering a second one that will arrive tomorrow (I have issues with both knees). I didn't think the hinge/rigid support would make that much of a difference.

#ChronicPain #ChronicIllness #EDS

I've been using compression knee brace sleeves for a while to help my pain, but received a McDavid x429 hinged knee brace yesterday. Let's just say the difference in my pain level and ease of walking resulted in ordering a second one that will arrive tomorrow (I have issues with both knees). I didn't think the hinge/rigid support would make that much of a difference.

#ChronicPain #ChronicIllness #EDS

I've been using compression knee brace sleeves for a while to help my pain, but received a McDavid x429 hinged knee brace yesterday. Let's just say the difference in my pain level and ease of walking resulted in ordering a second one that will arrive tomorrow (I have issues with both knees). I didn't think the hinge/rigid support would make that much of a difference.

#ChronicPain #ChronicIllness #EDS

I've been using compression knee brace sleeves for a while to help my pain, but received a McDavid x429 hinged knee brace yesterday. Let's just say the difference in my pain level and ease of walking resulted in ordering a second one that will arrive tomorrow (I have issues with both knees). I didn't think the hinge/rigid support would make that much of a difference.

#ChronicPain #ChronicIllness #EDS

I've been using compression knee brace sleeves for a while to help my pain, but received a McDavid x429 hinged knee brace yesterday. Let's just say the difference in my pain level and ease of walking resulted in ordering a second one that will arrive tomorrow (I have issues with both knees). I didn't think the hinge/rigid support would make that much of a difference.

#ChronicPain #ChronicIllness #EDS

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/2026/04/19/19-presidential-fitness-test-5/

Weltlage: Scheiße.
Hier: das LDN scheint anzuschlagen. Lisa 💘 ist aus eigener Kraft zwei Treppenstufen gegangen.

Dass die einzig wirksame Medikation (low-dose Naltrexon) natürlich "off-label" ist, mithin alles aus dem eigenen Taschengeld zu bezahlen ohne jegliche Rückerstattung, wen wundert's?

#MCAS #EDS #MECFS #LdN

Weltlage: Scheiße.
Hier: das LDN scheint anzuschlagen. Lisa 💘 ist aus eigener Kraft zwei Treppenstufen gegangen.

Dass die einzig wirksame Medikation (low-dose Naltrexon) natürlich "off-label" ist, mithin alles aus dem eigenen Taschengeld zu bezahlen ohne jegliche Rückerstattung, wen wundert's?

#MCAS #EDS #MECFS #LdN

Weltlage: Scheiße.
Hier: das LDN scheint anzuschlagen. Lisa 💘 ist aus eigener Kraft zwei Treppenstufen gegangen.

Dass die einzig wirksame Medikation (low-dose Naltrexon) natürlich "off-label" ist, mithin alles aus dem eigenen Taschengeld zu bezahlen ohne jegliche Rückerstattung, wen wundert's?

#MCAS #EDS #MECFS #LdN

Weltlage: Scheiße.
Hier: das LDN scheint anzuschlagen. Lisa 💘 ist aus eigener Kraft zwei Treppenstufen gegangen.

Dass die einzig wirksame Medikation (low-dose Naltrexon) natürlich "off-label" ist, mithin alles aus dem eigenen Taschengeld zu bezahlen ohne jegliche Rückerstattung, wen wundert's?

#MCAS #EDS #MECFS #LdN

https://www.europesays.com/be-fr/72314/ Or, pierres précieuses, bijoux: un appel à témoins lancé pour retrouver les braqueurs d’une bijouterie à Liège #Actualités #BE #BEFr #Belgique #Belgium #EDS;ETABLISSEMENTDEDEFENSESOCIALE;PSYCHIATRIE;PRISON;DELIT;CRIME;PAIFVES #News

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 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

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

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

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

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