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OhTWIST.bsky.social now too
@H2OhTwist
Oh, That's Why I'm So Tired! Ehlers-Danlos Syndrome survivor & writer. She/her. Co-author #EDSToolkit for doctors. EDS / HSD isn't rare, just rarely diagnosed.
disabled.social/@ohtwist
ohtwist.com
Joined March 2014
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Feb 14, 2021
    Yes, my timeline is primarily devoted to #MedEd #FOAMed around #EhlersDanlos and #hypermobility Spectrum Disorders et al. But "al" includes #autism and #ADHD it turns out. Whence some tweets related to those, and issues affecting #autistic people, like S1a's movie out now.
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Feb 28, 2023
    The #EhlersDanlos Syndromes are not rare, just rarely diagnosed. I will die on this hill. It doesn't matter that * some forms * are extremely rare. The collection as a whole is not. Calling it rare is a self-perpetuating meme and confirmation bias. #EDS #hEDS #RareDiseaseDay
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Nov 16, 2025
    I hate to say this, but there's been another loss in the community. I'm sitting on it while we draft the messaging with family. But yes. A third major disability and EDS advocate. Ugh. Stay tuned. 💔🥺✌️
    34K
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Sep 9, 2023
    And... finally found myself blocked by "The Professor ". Someone please tell her that continuing to insist EDS is rare is what's helping drive the high suicide rate from so much ongoing medical gaslighting? Stop being precious. It's not rare, it's rarely diagnosed. QED.
    11K
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Sep 11, 2024
    They found a consistent fibronectin result in the blood of BOTH hEDS and HSD patients, questioning the current differentiation of them: #EDS #hEDS #HSD #NEISvoid #zebras
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    SEDSConnective
    @SEDSConnective
    Sep 11, 2024
    A study looking at possible blood bio markers for hEDS HSD plus possible OA RA PsA and this issues of current diagnostic assessment researched using data from DICE / Hedge funded by @TheEDSociety onlinelibrary.wiley.com/doi/10.1002/aj…? #hypermobility
    12K
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Mar 13, 2022
    I just noticed that none of the major EDS charity websites has a page or info for how to handle EDS patients in an emergency. What are some tips you'd like doctors to consider as a heads up for us in the ER / A&E? I'll give a couple examples next but could use more...
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    OhTWIST.bsky.social now too
    @H2OhTwist
    May 5, 2024
    Some of the lesser known signs of a connective tissue disorder, of any type include: raised or sunken scars, easy bruising, tendinitis, subluxations, dislocations (not required though), myopia (nearsighted), astigmatism, dental crowding, tongue-tie. Cont- #EDS #hEDS #HSD #MedEd
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Jul 8, 2022
    The #EhlersDanlos syndromes are only considered rare because of confirmation bias. (Doctors keep calling them rare, so don't consider them as a possibility very often.) The collection as a whole is not rare, just rarely diagnosed. #EDS #HSD #hEDS #fibro #Fibromyalgia
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    OhTWIST.bsky.social now too
    @H2OhTwist
    May 26, 2021
    May, or may not have been officially diagnosed as autistic today... 😉 Okay, I was. And... it's bittersweet. Like, why did it take 50 years to be seen, much less properly supported? (I'm 54.) It changes everything and... nothing though. Im still me. Inept, info-dumping me.
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Jun 30, 2022
    Protip for being chronically ill with ADHD: Take however long you think something is going to take, and double it. If you get done sooner, use the time to rest and recharge, so you have the spoons (energy) to keep going with the next thing. Especially if living alone. 🙄👊
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    OhTWIST.bsky.social now too
    @H2OhTwist
    May 13, 2021
    I plan to still mask indoors in public spaces regardless, though Im fully Pfizered up (x2) and on buses and planes and trains for my more vulnerable friends and family. And I hate wearing them. I think we are getting a little ahead of ourselves. #COVID19 #CVID #PID
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    OhTWIST.bsky.social now too
    @H2OhTwist
    May 6, 2024
    Alright everyone, I keep hearing of #doctors saying to #EDS and #HSD patients "there's nothing you can do about it." Which is total BS. (Bollocks.) Reply or QT with what we can do about it. I'll start. #MedTwitter
    14K
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    OhTWIST.bsky.social now too
    @H2OhTwist
    Apr 9, 2022
    Hey #EDS #HSD #NEISvoid, What's your response to #doctors who refuse to diagnose and/or treat because they say "it doesn't matter, there's nothing we can do?" Which is the biggest load of hogwash this side of the Atlantic. 😡 Help me set #MedEd #MedTwitter #nurses straight!
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    OhTWIST.bsky.social now too
    @H2OhTwist
    May 20, 2023
    We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile: buff.ly/2rR6TYp #EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid
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