geschildert: ehlers-danlos-initiative.de/gwas/
Bei hEDS laufen einige Fäden zusammen. Vereinzelt wurde darauf zwar hingewiesen, aber von einer eigentlich angesagten Forschung im angemessen großen Stil ist mir bisher nichts bekannt.
Bei hEDS laufen einige Fäden zusammen. Vereinzelt wurde darauf zwar hingewiesen, aber von einer eigentlich angesagten Forschung im angemessen großen Stil ist mir bisher nichts bekannt.
GWAS hEDS - Deutsche Ehlers-Danlos Initiative e. V.
Neue GWAS zeigt genetische Risikofaktoren für das hypermobile Ehlers-Danlos-Syndrom (hEDS). Erkenntnisse für Diagnose und mögliche Therapieansätze.
ehlers-danlos-initiative.de
November 3, 2026 at 10:25 AM
geschildert: ehlers-danlos-initiative.de/gwas/
Bei hEDS laufen einige Fäden zusammen. Vereinzelt wurde darauf zwar hingewiesen, aber von einer eigentlich angesagten Forschung im angemessen großen Stil ist mir bisher nichts bekannt.
Bei hEDS laufen einige Fäden zusammen. Vereinzelt wurde darauf zwar hingewiesen, aber von einer eigentlich angesagten Forschung im angemessen großen Stil ist mir bisher nichts bekannt.
Surgery follow up went well! Things seem to be healing on schedule 😊 my hEDS usually causes slow/poor wound healing, but the incisions have been pretty normal!
November 3, 2026 at 9:59 PM
Surgery follow up went well! Things seem to be healing on schedule 😊 my hEDS usually causes slow/poor wound healing, but the incisions have been pretty normal!
Aus dem Originalartikel: "We also report large and significant genetic correlations with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which affects up to 30% of hEDS
patients..."
www.medrxiv.org/content/10.1...
patients..."
www.medrxiv.org/content/10.1...
Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis
Background Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common subtype of EDS, a group of heritable connective tissue disorders. Clinically, hEDS is defined by generalized joint hypermobility...
www.medrxiv.org
November 3, 2026 at 10:33 AM
Aus dem Originalartikel: "We also report large and significant genetic correlations with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which affects up to 30% of hEDS
patients..."
www.medrxiv.org/content/10.1...
patients..."
www.medrxiv.org/content/10.1...
probably also why im good at fighting
(not the heds . the adhd)
im just thinking about all my fucking comorbitities
(not the heds . the adhd)
im just thinking about all my fucking comorbitities
November 3, 2026 at 8:07 PM
probably also why im good at fighting
(not the heds . the adhd)
im just thinking about all my fucking comorbitities
(not the heds . the adhd)
im just thinking about all my fucking comorbitities
hEDS, MCAS, PoTS, ME/CFS und weitere Syndrome werden meist als Komorbiditäten bezeichnet. Diese treten aber in gewisser Hinsicht auf so unglaublich robuste Weise simultan auf, dass sich die Frage, wo genau die Fäden dieser Komorbidtäten zusammenlaufen,
link.springer.com/article/10.1...
link.springer.com/article/10.1...
The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) - Clinical Reviews in Allergy & Immunolog...
In recent years, an association between hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS) has garnered attention and...
link.springer.com
November 3, 2026 at 12:10 PM
hEDS, MCAS, PoTS, ME/CFS und weitere Syndrome werden meist als Komorbiditäten bezeichnet. Diese treten aber in gewisser Hinsicht auf so unglaublich robuste Weise simultan auf, dass sich die Frage, wo genau die Fäden dieser Komorbidtäten zusammenlaufen,
link.springer.com/article/10.1...
link.springer.com/article/10.1...
I have hEDS and use a cane intermittently. The LOOKS I get.
October 29, 2026 at 6:28 PM
I have hEDS and use a cane intermittently. The LOOKS I get.
Genetische Strukturen von hEDS überschneiden sich mit denen der häufigsten Komorbiditäten und weisen "...deutliche Zusammenhänge mit ME/CFS, Fibromyalgie, Depression, Autismus-Spektrum-Störungen, Angststörungen, Migräne und gastrointestinalen Erkrankungen." auf. Das zeigt eine GWAS, wie hier
November 3, 2026 at 10:25 AM
Genetische Strukturen von hEDS überschneiden sich mit denen der häufigsten Komorbiditäten und weisen "...deutliche Zusammenhänge mit ME/CFS, Fibromyalgie, Depression, Autismus-Spektrum-Störungen, Angststörungen, Migräne und gastrointestinalen Erkrankungen." auf. Das zeigt eine GWAS, wie hier
pca.st/episode/aace...
Follow up (of the type @england.nhs.uk, NICE & DHSC should have done on the claims made for GET/CBT as the only treatment for #ME as a subset of CFS by Psychology - no Bluesky presence, please correct me!) on hEDS.
#hEDS is frequently misdiagnosed as psychological.
Follow up (of the type @england.nhs.uk, NICE & DHSC should have done on the claims made for GET/CBT as the only treatment for #ME as a subset of CFS by Psychology - no Bluesky presence, please correct me!) on hEDS.
#hEDS is frequently misdiagnosed as psychological.
Bonus: Hard Conversations
In this episode, a health update with Sophie Roberts, a key surgeon stops seeing hundreds of EDS patients, and why the name of this podcast struck a nerve.A special thanks to the young women and…
pca.st
November 3, 2026 at 10:42 PM
pca.st/episode/aace...
Follow up (of the type @england.nhs.uk, NICE & DHSC should have done on the claims made for GET/CBT as the only treatment for #ME as a subset of CFS by Psychology - no Bluesky presence, please correct me!) on hEDS.
#hEDS is frequently misdiagnosed as psychological.
Follow up (of the type @england.nhs.uk, NICE & DHSC should have done on the claims made for GET/CBT as the only treatment for #ME as a subset of CFS by Psychology - no Bluesky presence, please correct me!) on hEDS.
#hEDS is frequently misdiagnosed as psychological.
hEDS kicking my ass but I am doing it
November 2, 2026 at 5:51 PM
hEDS kicking my ass but I am doing it
and POTS and MCAS and hEDS... not to mention having all those at once 😖
November 2, 2026 at 10:41 PM
and POTS and MCAS and hEDS... not to mention having all those at once 😖
If i dont have heds i would be surprised
October 31, 2026 at 3:20 AM
If i dont have heds i would be surprised
stress & changes in weather causes the worst joint aches for me! i have hEDS and it’s the worst!!! my joints are so unstable, i am constantly dislocating my shoulders, fingers, and ankles. i find i have been recently having a lot of issues with my lower back & hips
November 3, 2026 at 10:41 AM
stress & changes in weather causes the worst joint aches for me! i have hEDS and it’s the worst!!! my joints are so unstable, i am constantly dislocating my shoulders, fingers, and ankles. i find i have been recently having a lot of issues with my lower back & hips
Immerhin wird derzeit an der Einrichtung des neuen Forschungsdatenzentrums (FDZ) gearbeitet, um endlich die Abhängigkeit von hunderten Stakeholdern zu reduzieren.
Ich wollte aber unabhängig davon betonen, dass mein Einwurf zu den Zusammenhängen von hEDS, ME/CFS, MCAS, Fibromyalgie, und weitere
Ich wollte aber unabhängig davon betonen, dass mein Einwurf zu den Zusammenhängen von hEDS, ME/CFS, MCAS, Fibromyalgie, und weitere
November 4, 2026 at 10:34 AM
Immerhin wird derzeit an der Einrichtung des neuen Forschungsdatenzentrums (FDZ) gearbeitet, um endlich die Abhängigkeit von hunderten Stakeholdern zu reduzieren.
Ich wollte aber unabhängig davon betonen, dass mein Einwurf zu den Zusammenhängen von hEDS, ME/CFS, MCAS, Fibromyalgie, und weitere
Ich wollte aber unabhängig davon betonen, dass mein Einwurf zu den Zusammenhängen von hEDS, ME/CFS, MCAS, Fibromyalgie, und weitere
Back from neuro appointment.
From the complex multisystemic symptom presentation of hEDS, MCAS and ME, of which headaches are a frequent but manageable symptom and one of the least that I need help with, they attempt to diagnose me with....
migraines.
From the complex multisystemic symptom presentation of hEDS, MCAS and ME, of which headaches are a frequent but manageable symptom and one of the least that I need help with, they attempt to diagnose me with....
migraines.
November 2, 2026 at 10:54 AM
Back from neuro appointment.
From the complex multisystemic symptom presentation of hEDS, MCAS and ME, of which headaches are a frequent but manageable symptom and one of the least that I need help with, they attempt to diagnose me with....
migraines.
From the complex multisystemic symptom presentation of hEDS, MCAS and ME, of which headaches are a frequent but manageable symptom and one of the least that I need help with, they attempt to diagnose me with....
migraines.
and i just overstretch myself constantly on accident, then will spend weeks getting over it. i also have a lot of co-morbidities with hEDS like ADHD POTS, and histamine intolerances so i never know what’s causing what issue most of the time but those are some of the things i deal with
November 3, 2026 at 10:41 AM
and i just overstretch myself constantly on accident, then will spend weeks getting over it. i also have a lot of co-morbidities with hEDS like ADHD POTS, and histamine intolerances so i never know what’s causing what issue most of the time but those are some of the things i deal with
Even though I’m feeling great tonight… the hives have arrived.
And I’m officially on 10 prescription medications.
Daily.
#chronicillness #mcas #hEDS
#DDD #arthritis #hashimotos
And I’m officially on 10 prescription medications.
Daily.
#chronicillness #mcas #hEDS
#DDD #arthritis #hashimotos
November 4, 2026 at 3:05 AM
Even though I’m feeling great tonight… the hives have arrived.
And I’m officially on 10 prescription medications.
Daily.
#chronicillness #mcas #hEDS
#DDD #arthritis #hashimotos
And I’m officially on 10 prescription medications.
Daily.
#chronicillness #mcas #hEDS
#DDD #arthritis #hashimotos
November 2, 2026 at 4:26 PM
lol, they finally figured out the guy who was the obvious murderer but also suffered a stab wound was the murderer because he stabbed himself and HAS HEDS @eboldy.bsky.social lololol
November 1, 2026 at 4:24 AM
lol, they finally figured out the guy who was the obvious murderer but also suffered a stab wound was the murderer because he stabbed himself and HAS HEDS @eboldy.bsky.social lololol
Frage an Menschen mit #hEDS:
In unregelmäßigen Abständen schaffe ich es mir beim entspannten Schlafen, sehr schmerzhaft, das Brustbein zu verknacken und muss es wieder in die "normale Position" bringen.
Kennt das jemand? Meine Ärztin sagt, dass das nicht geht, aber, Aber, ABER DER SCHMERZ!1!!11
In unregelmäßigen Abständen schaffe ich es mir beim entspannten Schlafen, sehr schmerzhaft, das Brustbein zu verknacken und muss es wieder in die "normale Position" bringen.
Kennt das jemand? Meine Ärztin sagt, dass das nicht geht, aber, Aber, ABER DER SCHMERZ!1!!11
November 1, 2026 at 6:40 AM
Frage an Menschen mit #hEDS:
In unregelmäßigen Abständen schaffe ich es mir beim entspannten Schlafen, sehr schmerzhaft, das Brustbein zu verknacken und muss es wieder in die "normale Position" bringen.
Kennt das jemand? Meine Ärztin sagt, dass das nicht geht, aber, Aber, ABER DER SCHMERZ!1!!11
In unregelmäßigen Abständen schaffe ich es mir beim entspannten Schlafen, sehr schmerzhaft, das Brustbein zu verknacken und muss es wieder in die "normale Position" bringen.
Kennt das jemand? Meine Ärztin sagt, dass das nicht geht, aber, Aber, ABER DER SCHMERZ!1!!11
I don't think I'm mesmerized by the NYT, but I do have a lot of skepticism re how they choose what to focus on, and how much. They overemphasize Democratic ratfucking and FAR underemphasize Republican ratfucking, and it gives a false impression to voters who only see heds & deks.
October 29, 2026 at 3:58 PM
I don't think I'm mesmerized by the NYT, but I do have a lot of skepticism re how they choose what to focus on, and how much. They overemphasize Democratic ratfucking and FAR underemphasize Republican ratfucking, and it gives a false impression to voters who only see heds & deks.
Hypermobile / EDS / double jointed lifehack:
Press microwave buttons with your knuckles. So much less pain
#EDS #hEDS #hypermobility #double-jointed #disabilitylifehacks
Press microwave buttons with your knuckles. So much less pain
#EDS #hEDS #hypermobility #double-jointed #disabilitylifehacks
November 1, 2026 at 1:37 AM
Hypermobile / EDS / double jointed lifehack:
Press microwave buttons with your knuckles. So much less pain
#EDS #hEDS #hypermobility #double-jointed #disabilitylifehacks
Press microwave buttons with your knuckles. So much less pain
#EDS #hEDS #hypermobility #double-jointed #disabilitylifehacks
What to publish, how to frame it, heds, deks, breaking news alerts, placement on the papers app and site. All are choices. It’s disingenuous at best to pretend not to understand this.
November 1, 2026 at 3:54 PM
What to publish, how to frame it, heds, deks, breaking news alerts, placement on the papers app and site. All are choices. It’s disingenuous at best to pretend not to understand this.
That's excellent news! hEDS buddies!
October 29, 2026 at 5:27 PM
That's excellent news! hEDS buddies!