#hsd — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #hsd, aggregated by home.social.
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Today is #MEAwarenessDay!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
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Today is #MEAwarenessDay!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
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Today is #MEAwarenessDay!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
-
Today is #MEAwarenessDay!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
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Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
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
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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
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CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
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CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
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CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
-
CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
-
CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
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I hate that my muscles are always so stiff and sore and heavy. It’s so frustrating and uncomfortable all the time.
#chronicillness #mecfs #pots #hsd -
I hate that my muscles are always so stiff and sore and heavy. It’s so frustrating and uncomfortable all the time.
#chronicillness #mecfs #pots #hsd -
I hate that my muscles are always so stiff and sore and heavy. It’s so frustrating and uncomfortable all the time.
#chronicillness #mecfs #pots #hsd -
I hate that my muscles are always so stiff and sore and heavy. It’s so frustrating and uncomfortable all the time.
#chronicillness #mecfs #pots #hsd -
Rheinbahn plant massive Umstellungen im Nahverkehr
Wegen Brückensperrung ab 3,5 Tonnen Rheinbahn plant massive Umstellungen im Nahverkehr 13.01.2026 …
#Duesseldorf #Deutschland #Deutsch #DE #Schlagzeilen #Headlines #Nachrichten #News #Europe #Europa #EU #Düsseldorf #Brückensperrung #Fahrzeug #Germany #Haltestelle #Hochschule #HSD #Landeshauptstadt #Linienweg #Lörick #Nahverkehr #Nordrhein-Westfalen #NRW #Rheinbahn #Sperrung #Theodor-Heuss-Brücke #Umstellung
https://www.europesays.com/de/715207/ -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Hochschule Düsseldorf: Land kürzt Unis Gelder
Die Hochschule Düsseldorf (HSD) muss ab 2026 mit deutlich weniger Geld ihren H…
#Duesseldorf #Deutschland #Deutsch #DE #Schlagzeilen #Headlines #Nachrichten #News #Europe #Europa #EU #Düsseldorf #Bereich #besetzt #Einschränkungen #Einsparungen #Fachbereiche #Fachbereichen #Forschung #Germany #Hochschule #Hochschullehre #HSD #Lehre #Lehrende #Lehrender #mittel #Nordrhein-Westfalen #Sachmittelbereich #Studiengänge
https://www.europesays.com/de/638230/ -
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
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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
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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
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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
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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
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Unternehmen Hillward aus Düsseldorf: Beleuchtung am Set
„Es war Arbeitsliebe auf den e…
#Duesseldorf #Deutschland #Deutsch #DE #Schlagzeilen #Headlines #Nachrichten #News #Europe #Europa #EU #Düsseldorf #Design #Erward #Film #Filmset #Filmsets #gelernt #Germany #Hillebrand #Hillward #HSD #kennen #kennengelernt #Kommunikationsdesign #Konzepte #Licht #Lichtdesign #Lichtdesigners #Lichtkonzept #Lichtkonzepte #Lichtverhältnisse #Nordrhein-Westfalen #Unternehmer
https://www.europesays.com/de/564603/ -
I Am Me ‼️🇳🇬✅👍♥️
🌼 #Sunday, #November2, 2025 ✨🙌
Happy 1st Sunday in #November2025 💙
“Always remember that your own resolution to succeed is more important than any one thing.” ✅♥️ #quoteoftheday #sundayfunday #NewMonth #SundayService #HSD #BahdlexEmpire #bahdlex -
Petit update
Hier, j'étais au centre de référence des SED non vasculaires à Garches pour valider définitivement le diagnostic de #HSD. -
Petit update
Hier, j'étais au centre de référence des SED non vasculaires à Garches pour valider définitivement le diagnostic de #HSD. -
Symptom: Arthralgia and Arthritis
I need to pick a “job title” to describe the work I do here. I initially tried to make a poll with a plug in, but alas it didn’t work the way I hoped.
Here are some of the options I’m considering. Feel free to reply/comment with any or suggest your own!:
- Health & Care Advocacy Designer
- Mast Cell Artist Syndrome
- Chronically ill-ustrating Health Advocacy
- Plague Artist
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
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Symptom: Arthralgia and Arthritis
I need to pick a “job title” to describe the work I do here. I initially tried to make a poll with a plug in, but alas it didn’t work the way I hoped.
Here are some of the options I’m considering. Feel free to reply/comment with any or suggest your own!:
- Health & Care Advocacy Designer
- Mast Cell Artist Syndrome
- Chronically ill-ustrating Health Advocacy
- Plague Artist
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
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Symptom: Arthralgia and Arthritis
I need to pick a “job title” to describe the work I do here. I initially tried to make a poll with a plug in, but alas it didn’t work the way I hoped.
Here are some of the options I’m considering. Feel free to reply/comment with any or suggest your own!:
- Health & Care Advocacy Designer
- Mast Cell Artist Syndrome
- Chronically ill-ustrating Health Advocacy
- Plague Artist
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
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Symptom: Arthralgia and Arthritis
I need to pick a “job title” to describe the work I do here. I initially tried to make a poll with a plug in, but alas it didn’t work the way I hoped.
Here are some of the options I’m considering. Feel free to reply/comment with any or suggest your own!:
- Health & Care Advocacy Designer
- Mast Cell Artist Syndrome
- Chronically ill-ustrating Health Advocacy
- Plague Artist
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
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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
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CW: European League Of Football scores
#ELF scores week 13:
Ended games:
09.08.2025, 15:00 #BTH 31 @ 34 #ENT
09.08.2025, 17:00 #SRG 44 @ 3 #CCE
09.08.2025, 18:00 #WPA 36 @ 50 #VIE
09.08.2025, 18:00 #HEL 0 @ 77 #PAR
10.08.2025, 13:00 #HSD 7 @ 40 #NOR
10.08.2025, 13:00 #MBR 27 @ 30 #MUN
10.08.2025, 13:00 #FGY 28 @ 21 #PRA
10.08.2025, 16:25 #SRT 24 @ 34 #RHE -
Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc -
Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc -
Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc -
Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc -
Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc