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ohtwist.bsky.social
OhTWIST
@ohtwist.bsky.social
1.6K followers 1.2K following 540 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 2025 (tbd) (toes crossed) https://ohtwist.com
ohtwist.com
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 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! 😜 But hi! I post all things #EDS #HSD #hEDS #NEISvoid #MCAS #MCD #POTS #Dysatuonomia etc.
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 1d
Check it out! New #EDS podcast sponsored by CPP! Invisible Disabilities Week starts October 19th by the way.
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 1d
Here's a clip from our new EDS Unplugged Podcast Episode 1 "Invisible Disabilities" discussing the benefits of the sunflower lanyard in the UK:

#Zebras #NEISvoid #EDS #hEDS #HSD #MCAS #MedSky #Podcast #Hypermobility #Disability #Disabilities
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
US Job Accommodation Network (JAN) mentions #EDS in workplace for first time 2016:

askjan.org/disabilities...

#HMS #Fibro #MedEd #EhlersDanlos #disability #NEISvoid #MedSky
Ehlers-Danlos Syndrome
askjan.org
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Reposted by OhTWIST
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
A (not so) New Disease Cluster: #MCAS, #POTS & #EDS via JACI 2015: www.jacionline.org/article/S009... #MedEd #FOAMed #medicine #zebras #doctors #nurses #MedStudents #MedTwitter #doctors #nurses #NEISvoid
A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome
Patients with postural orthostatic tachycardia syndrome (POTS) and hypermobility often describe symptoms suggestive of mast cell activation. Herein, we describe a new, unique phenotype, characterized ...
www.jacionline.org
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Reposted by OhTWIST
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 11d
New EDS savvy clinic Hyp+Care set to open later 2026 in NYC - check it out:

buff.ly/DzKxUKv

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Fibro #MCAS #MECFS #LongCOVID #Spoonies #POTS #Dys #NEISvoid #Medicine #zebras #MedSky
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dyssupport.bsky.social
Dysautonomia Support Network @dyssupport.bsky.social · 7d
October is Dysautonomia Awareness Month 🩵 This condition affects at least 70M people worldwide but remains under-recognized. Learn about disorders of the autonomic nervous system: https://dysautonomiasupport.pulse.ly/4grjfcpqmv #DysautonomiaAwarenessMonth #POTS #LongCovid
What is Dysautonomia?
Dysautonomia [dis-aw-tuh-noh-mee-uh] Also called autonomic dysfunction, is an umbrella term used to describe disorders that affect the autonomic nervous system. ¹ The autonomic nervous system (ANS)…
dysautonomiasupport.pulse.ly
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 8d
October is #DysautonomiaAwarenessMonth

For many with #LongCovid, dysautonomia means daily struggles with dizziness, palpitations, fatigue & more

We need research, support & compassion
Let’s #MakeNoiseForTurquoise this October

#POTS #Dysautonomia #invisibleillness
Turquoise background with overlapping blue circles. In the centre, a simple illustration of a person with turquoise hair. Text around the person reads: “Dysautonomia Awareness Month.” Circles highlight symptoms: gastrointestinal issues, PoTS, heart palpitations, fatigue, shortness of breath, dizziness, cognitive issues, temperature dysregulation. Fainter circles in the background say and many many many more Long Covid SOS logo at the bottom left in white
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 4d
From ME Research UK:

Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. tinyurl.com/3f5sxbza
OCTOBER IS DYSAUTONOMIA AWARENESS MONTH Dysautonomia is an umbrella term that describes a disorder of the autonomic nervous system. It is recognised that viruses can trigger dysautonomia. Many people with ME/CFS experience symptoms of dysautonomia. INFORM. INFLUENCE. INVEST. aft RESEARCH UK SCO36942
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batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 8d
October is #POTS Awareness Month!
POTS is a serious condition where simply standing can cause rapid heart rate, dizziness, fainting, and crushing fatigue. It often strikes those with #MECFS & #LongCOVID. All month we’re sharing resources & raising visibility. Stay tuned!
White ribbon on teal background with text: "October is POTS Awareness Month."
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Reposted by OhTWIST
katieholten.bsky.social
Katie Holten @katieholten.bsky.social · 5d
POTS is a form of #dysautonomia — a disorder of the autonomic nervous system. This branch of the nervous system regulates things we don’t consciously control, like heart rate. I have #POTS from long COVID. When I stand up, all the blood in my body falls with gravity. 🫠

#DysautonomiaAwarenessMonth
bhanlon15.bsky.social
Billy Hanlon @bhanlon15.bsky.social · 6d
Neuroscience News: 'Long COVID Linked to Surge in POTS Cases'

'Now, researchers at Karolinska Institutet show that POTS occurs in almost a third of patients with severe long COVID.'

neurosciencenews.com/long-covid-p...
Long COVID Linked to Surge in POTS Cases - Neuroscience News
Researchers have found that postural orthostatic tachycardia syndrome (POTS) occurs in almost a third of patients with severe long COVID, making it far more common than in the general population.
neurosciencenews.com
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
Pelvic Organ Prolapse is highly co-occurring in hypermobile patients with any form of connective tissue disorders, including the #EDS #HSD and #MarfanSyndrome. Find support here:
www.pelvicorganprolapsesupport.org
#spoonie #Spoonies #zebras #POP #hEDS #health #NEISvoid
Pelvic Organ Prolapse Support | Resources, Treatment & Community
Learn about pelvic organ prolapse with trusted resources, treatment options, FAQs, and community support to help women find guidance, hope, and care.
www.pelvicorganprolapsesupport.org
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Reposted by OhTWIST
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 5d
Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis

buff.ly/yZJQeDw

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky
Blue on white infographic reads: "BUILDING YOUR MEDICAL TEAM: A PATIENT CHECKLIST." There are seven tips, each with a green checkmark: Describe your daily life clearly: Tell doctors about your pain, fatigue, GI issues, and daily limitations. Use relatable examples: Compare your challenges to things doctors know (like having the flu). Ask trusted doctors for referrals: “Who would you send your own child to?” is a powerful question. Stay focused in appointments: Bring a short, organized list of issues related only to that doctor’s specialty. Share helpful resources: Provide links to articles or presentations. If they’re not interested, consider moving on. Don’t overlook younger doctors: They’re often eager to learn and open-minded. Use your support network: Ask local groups and friends. There are small illustrations including a thermometer, clipboard, doctor, group of people. "www.chronicpainpartners.com" and in the top right corner is a logo for EDS Awareness (Ehlers-Danlos Syndromes).
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thezebraalliance.bsky.social
The Zebra Alliance Community @thezebraalliance.bsky.social · 9d
Super cool!
If in New York + have EDS, definitely check Hyp+Care out next year! Mark your calendar. 🤗 🩵🦓🩵
cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 11d
New EDS savvy clinic Hyp+Care set to open later 2026 in NYC - check it out:

buff.ly/DzKxUKv

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Fibro #MCAS #MECFS #LongCOVID #Spoonies #POTS #Dys #NEISvoid #Medicine #zebras #MedSky
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
Happy to help! 👊✌️
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
When Else to Suspect Ehlers-Danlos Syndrome or #HSD
ohtwist.com/when-else-to...

#EDS #HMS #Fibromyalgia #MedEd #Doctors #Spoonies #Hypermobility #Zebras #MedSky #NEISvoid #Autistic #Autism #ADHD #Pain #ChronicPain #Fibro
When Else to Suspect Ehlers-Danlos Syndrome - Oh TWIST
When Else to Suspect Ehlers-Danlos Syndrome looks at additional signs and symptoms of the disease and its comorbid diseases.
ohtwist.com
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
US Job Accommodation Network (JAN) mentions #EDS in workplace for first time 2016:

askjan.org/disabilities...

#HMS #Fibro #MedEd #EhlersDanlos #disability #NEISvoid #MedSky
Ehlers-Danlos Syndrome
askjan.org
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
A (not so) New Disease Cluster: #MCAS, #POTS & #EDS via JACI 2015: www.jacionline.org/article/S009... #MedEd #FOAMed #medicine #zebras #doctors #nurses #MedStudents #MedTwitter #doctors #nurses #NEISvoid
A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome
Patients with postural orthostatic tachycardia syndrome (POTS) and hypermobility often describe symptoms suggestive of mast cell activation. Herein, we describe a new, unique phenotype, characterized ...
www.jacionline.org
2 2
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 5d
Pelvic Organ Prolapse is highly co-occurring in hypermobile patients with any form of connective tissue disorders, including the #EDS #HSD and #MarfanSyndrome. Find support here:
www.pelvicorganprolapsesupport.org
#spoonie #Spoonies #zebras #POP #hEDS #health #NEISvoid
Pelvic Organ Prolapse Support | Resources, Treatment & Community
Learn about pelvic organ prolapse with trusted resources, treatment options, FAQs, and community support to help women find guidance, hope, and care.
www.pelvicorganprolapsesupport.org
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Reposted by OhTWIST
chronicillness.bsky.social
Chronic Illness Humor @chronicillness.bsky.social · 6d
CONFESSIONS OF LIVING WITH AN INVISIBLE ILLNESS I don't look sick I always feel guilty I'm always tired I feel like no one understands I get nervous for every doctor's appointment I resent people who are healthy I am always in pain My mental health takes a toll I've tried so many different medications I never know how I m going to feel day day-to-day @dear_chronic_pain
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 6d
Thank you. The flu shot is now piling on today ugh. I'll live.
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 6d
Thank you. I fear I spoke too soon. Add in a mild reaction to the flu shot yesterday and I'm down for the count today. And still sore. Just not as acute. I'll live.
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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 7d
Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more:

buff.ly/UyLbCzo

#EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research
EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast
New EDS Lab, hEDS gene research, IIH, Hormones and EDS, New Podcast, Book with EDS character The Chronic Pain Partners Post Chronic Pain Partners…
buff.ly
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photograbee.bsky.social
Photograbee @photograbee.bsky.social · 7d
That's fine. I'm adding some #bees on my wild leeks from last July then for #ThrowbackInsectThursday, ha! ✌️🐝
A honeybee and black and yellow bumblebee share a pale pink blooming leek ball. Three honeybees and a black and yellow bumblebee share another pale pink blooming leek ball in the sun.
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 6d
TY. No, not fun at all. I've been guzzling loads and I think she's either dissolving or passed. I'm still a mite tender but much better than yesterday. Phew. 😔

Checking for infection still. (I gave a sample at doctor's today.)
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 6d
Thank you. She either reduced, or passed in the last 24 hours. I'm better but not 100%. And still ruling out infection. (Gave urine sample today.)

Back to guzzling water to keep flushing her. I dissolved her once before.
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 7d
Ugh! I'm battling a bouncing baby kidney stone who has both broken loose of her moorings in Lefty, and is also harboring some fugitives. :(

Dammit, I got a lot on my plate, and no room for this! (Do we ever?) Just... painful! Next...😖
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