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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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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 2d
New #EDS study out shows average 20 year diagnostic delay and significant polymorbidity in #hEDS and #HSD patients:

pubmed.ncbi.nlm.nih.gov/40869462/
Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs - PubMed
<span><b>Background:</b> Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSDs) are prevalent, complex conditions marked by chronic pain, joint instability, and multisys...
pubmed.ncbi.nlm.nih.gov
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 11d
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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photograbee.bsky.social
Photograbee @photograbee.bsky.social · 5d
I'll add some with #bees of course. Just bee-cause. 😉♥️🐝✌️#photos
Close-up of a large white dahlia with red stripes and yellow center with a honeybee on it in the setting sun. Jan Groh Photograbee 2025. Close-up side shot at an angle of a vibrant red and yellow Gaillardia flower with a honeybee on it in setting sun. Jan Groh Photograbee 2025.
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jessedarland.bsky.social
Jesse Darland @jessedarland.bsky.social · 5d
"Here's Why That's Is a Good Thing" made me laugh with joy! Changing the narrative from 'autism=bad' to something so much better and more life-affirming.
thinkingautism.com
Thinking Person's Guide to Autism @thinkingautism.com · 5d
Unfounded claims about an “autism epidemic” usually come from news or media outlets that are trying to sell stories, or from grievance parent-led orgs that focus more on eliminating autism than on supporting autistic people. At TPGA.

thinkingautismguide.com/2023/03/auti... #autism #neurodiversity
Autism Rates Are Now 1 in 36. Here's Why That Is a Good Thing.
The new 1 in 36 autism rate means the CDC is getting better at finding and diagnosing existing autism, not finding higher autism rates.
thinkingautismguide.com
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ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 7d
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 · 7d
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 · 11d
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 · 11d
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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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 17d
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 · 13d
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 · 14d
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 · 10d
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 · 14d
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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katieholten.bsky.social
Katie Holten @katieholten.bsky.social · 11d
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 · 12d
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 · 11d
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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cppedsa.bsky.social
Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 11d
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 · 15d
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 · 17d
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 · 11d
Happy to help! 👊✌️
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 11d
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
1 2 4
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 11d
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 · 11d
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
3 5
ohtwist.bsky.social
OhTWIST @ohtwist.bsky.social · 11d
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
2 3
Reposted by OhTWIST
chronicillness.bsky.social
Chronic Illness Humor @chronicillness.bsky.social · 12d
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 · 11d
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 · 11d
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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