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ohtwist.bsky.social
OhTWIST
@ohtwist.bsky.social
1.6K followers 1.2K following 610 posts
Oh That's Why I'm So Tired - Ehlers-Danlos syndromes blogger and medical educator, co-author EDS Toolkit for Doctors 2018, book on EDS and autism coming 2026 (tbd) (toes crossed)

https://ohtwist.com
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social ยท Nov 11
Hello blue peeps - I've just gone through the wormhole and signed up here on the sky app. Bear with me as I slowly acclimate. I also don't multitask well! ๐Ÿ˜œ But hi! I post all things #EDS #HSD #hEDS #NEISvoid #MCAS #MCD #POTS #Dysatuonomia etc.
Reposted by OhTWIST
ohtwist.bsky.social
Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review) 2020

buff.ly/3SoLVM7

#MCAS #ADHD #ADD #autism #allergy #nuerology #inflammation #NEISvoid #EDS #HSD #hypermobility #MedTwitter
Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review)
Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental and behavioral disorder with a serious negative impact on the quality of life from childhood until adulthood, which mayโ€ฆ
buff.ly
February 10, 2026 at 2:11 PM
Reposted by OhTWIST
loukas.bsky.social
Full text:

"emphasise the importance of the full recognition of trans women as women, noting that their inclusion is essential for the effectiveness of any gender-equality and anti-violence policies; call for recognition of and equal access for trans women to protection and support services;"
February 12, 2026 at 1:17 PM
ohtwist.bsky.social
Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders!

gptoolkit.ehlers-danlos.org

#MedEd #FOAMed #MedTwitter #NEISvoid
The Ehlers-Danlos syndromes GP Toolkit
A guide for GP's to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral
gptoolkit.ehlers-danlos.org
February 12, 2026 at 2:11 PM
Reposted by OhTWIST
cppedsa.bsky.social
Wanted! Two guest writers to write about your experiences with EDS and mobility devices. Paying $100 USD /piece. Send pitches to: contact@karina-sturm.com thanks.

#EDS #hEDS #HSD #Hypermobility #Disability #Mobility #Writers #Writing #Zebras #Spoonies #NEISvoid
A โ€œWanted!โ€ poster-style graphic advertising for guest writers about EDS and mobility aids. The design looks like an old western wanted poster with a tan paper background, dark border, and two illustrated pointing hands near the top left and top right edges. Text on the poster reads: WANTED! Two guest writers for pieces on your experience with EDS and mobility aids. $100 USD/piece. Send pitches to: contact@karina-sturm.com chronicpainpartners.com A circular logo on the left says โ€œEDS Awarenessโ€ with smaller text โ€œEhlers-Danlos Syndromes.โ€ There are cartoon illustrations of three people using mobility aids: one standing with forearm crutches in the center, one seated in a wheelchair on the right, and one on a recumbent handcycle or adaptive trike on the left. A light-colored dog is lying down near the bottom center.
February 10, 2026 at 1:14 PM
ohtwist.bsky.social
Good question.
February 11, 2026 at 3:43 PM
ohtwist.bsky.social
Swedish study in 2016 concludes: Individuals with Celiac Disease have higher risk of EDS/JHS than the general population, which may be due to surveillance bias or factors intrinsic to celiac development.

buff.ly/3vptsUR

#EDS #HSD #hEDS #hypermobility #fibro #NEISvoid
Nationwide population-based cohort study of celiac disease and risk of Ehlers-Danlos syndrome and joint hypermobility syndrome - PubMed
Individuals with CD have higher risk of EDS/JHS than the general population, which may be due to surveillance bias or factors intrinsic to celiac development.
buff.ly
February 11, 2026 at 2:11 PM
Reposted by OhTWIST
thezebraalliance.bsky.social
Doctor Clair is a great resource for folks with #EhlersDanlosSyndrome and #HSD ๐Ÿฉต๐Ÿฆ“๐Ÿฉต ๐Ÿ‘‡
(You can also find her on IG)

EDS Resources: @ehlersdanlos.bsky.social
#EDS #hEDS #raredisease #chronicillness
ehlersdanlos.bsky.social The Ehlers-Danlos Society @ehlersdanlos.bsky.social ยท 18d
The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. Each type has its own set of features with distinct diagnostic criteria. youtu.be/w62qVQvznYM?...
13 EDS Types Explained: Symptoms, Genetics, and Key Differences
YouTube video by Doctor Clair
youtu.be
February 10, 2026 at 9:56 PM
ohtwist.bsky.social
Glad to hear that helped!
February 11, 2026 at 5:56 AM
ohtwist.bsky.social
Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review) 2020

buff.ly/3SoLVM7

#MCAS #ADHD #ADD #autism #allergy #nuerology #inflammation #NEISvoid #EDS #HSD #hypermobility #MedTwitter
Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review)
Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental and behavioral disorder with a serious negative impact on the quality of life from childhood until adulthood, which mayโ€ฆ
buff.ly
February 10, 2026 at 2:11 PM
Reposted by OhTWIST
ohtwist.bsky.social
Peeling the Diagnostic Onion - is your doctor falling for too many red herrings and missing your #hypermobility?

buff.ly/2QA8nRe

#HSD #EDS #hEDS #EhlersDanlos #pain #MedEd #MedTwitter #Fibromyalgia #fibro #zebras #NEISvoid #autistic #ADHD
buff.ly
January 26, 2026 at 11:05 PM
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ohtwist.bsky.social
#COVID19, Mast Cells, Cytokine Storm, Psychological Stress, and Neuroinflammation - Kempuraj, Selvakumar, Ahmed et al July 2020 - in which the role of mast cells in COVID-19 sequelae are recognized:
journals.sagepub.com/doi/full/10.... #MCAS #EDS #HSD #MedEd

#MedTwitter #doctors #NEISvoid
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
journals.sagepub.com
January 26, 2026 at 11:05 PM
Reposted by OhTWIST
chronicillness.bsky.social
my disease is so rare spell-check thinks i made it up mybodyistryingtokillme.com
February 10, 2026 at 12:45 PM
Reposted by OhTWIST
c-anemone-d.bsky.social
I spent the last few days after receiving this beautiful book reading it at schools and inclusion events, and to everyone I know and every teacher Iโ€™ve run into. The kids hung on every word and several of the teachers and professionals (including me) openly cried.

Communication is more than words.
February 10, 2026 at 1:07 PM
Reposted by OhTWIST
cppedsa.bsky.social
From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors

buff.ly/Dys6qeP

#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky
Logo for Brigant Laboratory showing dark blue text on a light gray background reading BL LABORATORY. The B and L are extra large, with a DNA twist running along the vertical length of the L, and molecular connectors coming off over the B.
February 3, 2026 at 1:14 PM
ohtwist.bsky.social
Got it, thanks!
February 10, 2026 at 1:12 PM
Reposted by OhTWIST
thezebraalliance.bsky.social
How do you handle unsolicited advice?
๐Ÿฉต๐Ÿฆ“๐Ÿฉต
#chronicillness #EDS #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #ehlersdanlossyndrome #HSD
cnbc.com CNBC @cnbc.com ยท 7d
Thereโ€™s a psychological reason why advice that we didnโ€™t ask for often stings.

So, how do you handle unsolicited advice? The key is to calmly and respectfully acknowledge it, but never surrender your agency, according to one expert. Here are five simple, effective ways to respond.
Psychology expert: Use these 5 phrases to shut down unsolicited advice every time
"Advice will always come, whether you want it to or not," writes Dr. Shadรฉ Zahrai. "Your power lies in how you receive it."
cnb.cx
February 6, 2026 at 7:11 PM
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cppedsa.bsky.social
Hot off the press, our February edition of Chronic Pain Partners news for zebras:

buff.ly/Yz8aFCG

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #NEISvoid #MedEd #MedSky
A teal promotional graphic for a February newsletter, featuring a black-and-white zebra lying down in the center-left. Text on the image: FEB NEWS From Chronic Pain Partners Check out whatโ€™s in store in our February Newsletterโ€ฆ In the top-right is a circular logo that says: EDS Awareness Ehlers-Danlos Syndromes Thereโ€™s also a yellow arrow at the bottom pointing to the right.
February 2, 2026 at 12:32 PM
ohtwist.bsky.social
h2ohtwist@gmail.com thanks!
February 5, 2026 at 7:10 PM
ohtwist.bsky.social
๐Ÿ’”๐Ÿซ‚
January 31, 2026 at 10:16 PM
Reposted by OhTWIST
violetta.bsky.social
#medSky
January 31, 2026 at 6:41 AM
ohtwist.bsky.social
Yeah, tough choice. I'm so sorry about your mom.
January 31, 2026 at 5:12 AM
Reposted by OhTWIST
sickbaycheese.bsky.social
"Proteomic analysis revealed 35 differentially expressed proteins in hEDS, with 43% involved in the complement cascade and 80% linked to immune, coagulation, or inflammatory pathways."
January 30, 2026 at 8:53 AM
Reposted by OhTWIST
ohtwist.bsky.social
Proteomic discoveries in hypermobile Ehlersโ€“Danlos syndrome reveal insights into disease pathophysiology October 2025 Griggs, Daylor, Petrucci et al

academic.oup.com/immunohorizo...

#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology
Proteomic discoveries in hypermobile Ehlersโ€“Danlos syndrome reveal insights into disease pathophysiology
Abstract. Hypermobile Ehlersโ€“Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study a
academic.oup.com
January 26, 2026 at 11:04 PM
ohtwist.bsky.social
Still! Why I post.
January 30, 2026 at 7:49 AM
ohtwist.bsky.social
I'm so sorry! That's awful. I hope you are better now.
January 30, 2026 at 3:47 AM