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ohtwist.bsky.social
OhTWIST
@ohtwist.bsky.social
1.6K followers 1.2K following 580 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
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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.
Reposted by OhTWIST
cppedsa.bsky.social
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
December 27, 2025 at 12:14 PM
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thezebraalliance.bsky.social
If you know, you know. 🚑
And its even worse if youre Canadian. Just kidding! ... sort of 😅😉

#healthmemes
linktr.ee/thezebraalliance
#portlandia #meme #memes #jokes #chronicillness #EDS #rarediseases #invisibleillness #disability #dynamicdisability #mentalhealth
When youre having a health emergency but still trying not to be a burden: "Hello 911? How are you?" (From the show, Portlandia)
January 3, 2026 at 3:30 PM
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2heartswellness.bsky.social
Sometimes, a person truly needs the diagnosis. Other times, there is some wiggle room & maybe you don't need it. Either way, #EhlersDanlosSyndrome is complicated.

#BlogPost #Diagnosis #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness
Diagnosing EDS? (The Why & How of Complex Conditions)
***** Diagnosis.            It should–at least in theory–be useful for treatment planning. Having an identified condition should also mean that the prognosis is reasonably clear, at lea…
buff.ly
January 3, 2026 at 3:36 AM
ohtwist.bsky.social
To anyone who knows my friend Angela Rozewski and her son Stryder Doescher, someone has hacked her Facebook account and is defaming her all over her long held and curated Stryders Story page. It's gross and pure libel, trust me. We're in shock. She is medically fragile now and struggling. 😰 #EDS
January 3, 2026 at 6:43 PM
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achronicvoice.com
“I hate having to exclude myself from ‘life.’ The physical pain in every inch of my #body inside and out is overwhelming me. I feel #anxious because I don’t know how long this will last, or how long I can #survive it. - Chris H”: buff.ly/eX4fkOC

via @themightysite.bsky.social
#EDS #disability
21 People With Ehlers-Danlos Syndrome Describe What a 'Bad Pain Day' Really Looks Like
"It means so much more than just the physical pain."
buff.ly
December 31, 2025 at 2:30 PM
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cppedsa.bsky.social
Help us kickstart 2026 with a donation in John Ferman's memory here today, thank you:

buff.ly/mtpdkn9

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Zebras #Spoonies #Support #MedEd #MedSky #Medicine #HealthNews #NEISvoid
Colorful fundraising graphic. In the center is a clear jar filled with coins, labeled "DONATE." Bright party bunting and confetti decorate the background along with cartoon bursts and a party popper icon. At the top, black text reads, "Help us kick 2026 off with a bang!" In the upper right corner is a circular badge: "EDS Awareness Ehlers-Danlos Syndromes." Along the orange bottom border, the website "WWW.CHRONICPAINPARTNERS.COM" is displayed in blue. The scene is festive and cheerful, encouraging donations for EDS awareness.
December 30, 2025 at 1:14 PM
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cppedsa.bsky.social
In which Donna Sullivan shares a small win for the #EDS community with our EDS Unplugged Podcast hosts in Episode 2:
www.chronicpainpartners.com/podcast/

#Hypermobility #hEDS #HSD #Zebras #NEISVoid #Spoonies #COMPLICATED #MedSky #Doctors #podcast #Medicine
January 2, 2026 at 3:32 AM
ohtwist.bsky.social
♥️🙏♥️
December 30, 2025 at 5:15 PM
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beeloveds.bsky.social
For more on #EDS, follow my alter @ohtwist.bsky.social or check out:

Https://OhTWIST.com

Yes, it's as painful as it sounds. 🥺✌️
December 30, 2025 at 5:06 PM
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ohtwist.bsky.social
Proteomic discoveries in hypermobile Ehlers–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 Ehlers–Danlos syndrome reveal insights into disease pathophysiology
Abstract. Hypermobile Ehlers–Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study a
academic.oup.com
December 19, 2025 at 7:52 AM
ohtwist.bsky.social
Interesting mix of studies in here this month. Check it out!
cppedsa.bsky.social Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 9d
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
December 27, 2025 at 7:43 PM
Reposted by OhTWIST
ohtwist.bsky.social
Via the @HMSACharity and Ehlers-Danlos Support UK, check out the 2021 #EDSSchoolToolkit for parents and teachers of bendy (hypermobile) students, diagnosed or not:

theschooltoolkit.org

#EDS #HSD #HMS #JHS #hEDS #hypermobility #autism #ADHD #MCAS #POTS #NEISvoid
School toolkit for EDS and JHS
A free resource for school staff to help support pupils with joint hypermobility syndrome (JHS) or the Ehlers-Danlos syndromes (EDS)
theschooltoolkit.org
December 19, 2025 at 7:51 AM
Reposted by OhTWIST
broadwaybabyto.bsky.social
When I had a life threatening post operative internal bleed, an ER sent me home three times.

All three times they made it clear my “attitude” wasn’t appreciated.

That I was “wasting their time”.

On the 4th visit they threatened to have security remove me.

My then bf got loud & a doctor noticed.
chantzy.bsky.social Chantzy @chantzy.bsky.social · 11d
The wife of the 44 year-old man who died this week in Edmonton after waiting 8 hrs in the ER with chest pain was told by hospital security staff she was "being rude"

Are you supposed to just be super calm & polite while your spouse dies a preventable death in the hospital?
December 26, 2025 at 5:41 AM
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achronicvoice.com
"“Don’t beat yourself up, just give your body what it needs right now. Rest, love and nourishment.” – Invisible_Hypo.": buff.ly/ay1wuCm

#ChronicPain #healing #SelfLove #spoonies #ChronicIllness
40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)
A roundup of best chronic pain management tips from 40 people who live with chronic illness, for when a pain flare strikes without warning.
buff.ly
December 25, 2025 at 9:30 PM
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2heartswellness.bsky.social
If you know, you know.

#BlogPost #MCAS #EDS #hEDS #MCAS #POTS #HolisticHealth #GutHealth 💕#Wellness
Holidays and MCAS: Surviving and Thriving From November To January
I seriously almost titled this essay “girding your loins for the holidays when you have MCAS.”  It kind of does feel like being thrown onto an obstacle course where you have to battle y…
buff.ly
December 24, 2025 at 1:31 AM
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turnoftheshrew.bsky.social
Medical codes of diagnoses common in our community that doctors should be using for billing & documentation. Whenever a study is done on prevalence of these diseases using electronic health records, these codes matter. If we aren’t coded, we aren’t counted. #LongCovid #MECFS #POTS #EDS
U09.9 post Covid conditions unspecified G90.A POTS G93.32 ME/CFS Q79.60 Ehlers-Danlos syndrome unspecified M35.7 hypermobility syndrome
December 18, 2025 at 5:27 PM
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cppedsa.bsky.social
Happy Holidays from the media team at Chronic Pain Partners, we look forward to continuing to support #zebras in 2026.

#EDS #hEDS #HSD #Hypermobility #EDSAwareness #Spoonies #EhlersDanlosSyndrome
December 24, 2025 at 2:57 AM
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thinkingautism.com
"The concept of ' #profoundAutism ' is deeply problematic. It risks reinforcing dehumanizing assumptions—that the absence of speech equates to an absence of thought, agency, or interiority, & that Autistic people with CSN are–as the Lancet Commission claims—'unable to advocate for themselves.'" 1/2
December 24, 2025 at 6:02 AM
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ohtwist.bsky.social
Is #hypermobility just a big red herring? I think so in 2021…

ohtwist.com/the-hypermob...

#EDS #HSD #hEDS #EhlersDanlos #fibromyalgia #fibro #MedEd #FOAMed #MedTwitter #nurses #doctors #pain #rheumatology #genetics #NEISvoid
The Hypermobile Red Herring - Oh TWIST
How hypermobility can be a red herring, leading doctors to miss other symptoms in some, and dismiss the same symptoms in others
ohtwist.com
December 19, 2025 at 7:53 AM
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thezebraalliance.bsky.social
🎁 #GiftGuide: Book Lovers with #ChronicIllness 📖
We met the author in an EDS Support Group: Wonderful woman! She bares all in Recognise Me: her journey to diagnosis and beyond. 🩵🦓🩵
🧵🧵🧵
#bookrecommendations #books #chronicillness #raredisease #chronicpain #disability #ehlersdanlossyndrome #EDS
Recognise ME: Memoir documenting the raw journey through medical gaslighting as a chronic illness patient
Recognise ME: Memoir documenting the raw journey through medical gaslighting as a chronic illness patient
amzn.to
December 18, 2025 at 4:02 PM
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cppedsa.bsky.social
For anyone not yet aware, we are missing our Founder and President John Ferman dearly this Christmas 2025:

buff.ly/5zJaMRd

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #NEISvoid #Support #CPP #MedEd #Advocacy #MedSky
Memorial graphic featuring two photos of John Ferman, an older man with neatly combed hair, both showing him smiling. At the top, text in large blue letters reads "IN MEMORY." Below, it says, "We miss you dearly this Christmas." There are small images of doves at the top corners and decorative holiday greenery with red bows framing the text. "John Ferman," appears in bold white letters, described as the founder of Chronic Pain Partners. A small, lit candle illustration is centered between the two photos. In the left photo, the man wears a lavender shirt and a lanyard with name tags; in the right, he wears a black shirt promoting Ehlers-Danlos Syndrome awareness, also with a name tag. The overall tone is warm, respectful, and holiday-themed.
December 22, 2025 at 12:32 PM
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chromatowski.bsky.social
Also, more than once I’ve seen decks from pharma/biotech companies mention how many people have a given ICD code in their pitch for why investing in that disease makes sense.

Not having our conditions coded in our charts means we attract less investment.

#LongCovid #MECFS #EDS #POTS
turnoftheshrew.bsky.social Alexis M. @turnoftheshrew.bsky.social · 18d
Medical codes of diagnoses common in our community that doctors should be using for billing & documentation. Whenever a study is done on prevalence of these diseases using electronic health records, these codes matter. If we aren’t coded, we aren’t counted. #LongCovid #MECFS #POTS #EDS
U09.9 post Covid conditions unspecified G90.A POTS G93.32 ME/CFS Q79.60 Ehlers-Danlos syndrome unspecified M35.7 hypermobility syndrome
December 18, 2025 at 6:59 PM
Reposted by OhTWIST
cppedsa.bsky.social
Meet Donna Sullivan, mom of 3 kids with EDS in the top of podcast EDS Unplugged Episode 2:

#EDS #hEDS #HSD #Zebras #NEISVoid #MedEd #MedSky #EhlersDanlos #Medicine #COMPLICATED
December 20, 2025 at 10:43 PM
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sickbaycheese.bsky.social
$50 in 20 days

Please help! It costs more than $50 to keep my utilities on!

💸💕 #MutualAid #MutualAidVoid #HelpPeopleLive #KeepFolksAlive #HelpSky #MARequest
sickbaycheese.bsky.social Caitlin 🏜 🍰 @sickbaycheese.bsky.social · Dec 1
$1000 goal for Dec. (higher if no SNAP payout)

We're a family of 5: 2 adults, 3 kids, w/2 cats in need of financial assistance.

My husband got laid off in June & unemployment benefits ran out. No luck finding a new job.

I am disabled & can't work.

$/Venmo: $SickBayCaitlin
PayPal thru Ko-fi link:
Support SickBayCheese
Support SickBayCheese
ko-fi.com
December 21, 2025 at 3:48 AM
ohtwist.bsky.social
I just realized I blew through my 1 year anniversary here without realizing. What a year! (Personally and nationally.) 🙃
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.
December 20, 2025 at 3:24 PM