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ohtwist.bsky.social
OhTWIST
@ohtwist.bsky.social
1.6K followers 1.2K following 560 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.
ohtwist.bsky.social
It me. 🥺
beeloveds.bsky.social BeeLover @beeloveds.bsky.social · 14h
Still breaking my fever. Doing a little better than yesterday but not 100%.

#SleepyBee
November 11, 2025 at 6:05 PM
Reposted by OhTWIST
broadwaybabyto.bsky.social
Me when I hear Schumer say he will keep “fighting”.
November 10, 2025 at 5:55 AM
Reposted by OhTWIST
petermorley.bsky.social
🚨CTA: PLEASE CALL YOUR CONGRESS MEMBERS & TELL THEM TO EXTEND ACA SUBSIDIES. IT DOES NOT MATTER WHERE YOU LIVE IN THE U.S. WE ALL MUST CALL, IT'S CRUCIAL!

ALL 100 U.S. Senators DC Contact Information Phone #:

Alabama
Senator Tommy Tuberville 202-224-4124
Senator Katie Boyd Britt 202-224-5744

1/18
November 9, 2025 at 6:09 PM
Reposted by OhTWIST
ph-ph-ph.bsky.social
⚠️

SARS-CoV

🧠
November 9, 2025 at 5:01 PM
ohtwist.bsky.social
Oof. Battling my first illness in over a year. Was really worried it was COVID due to the super sore throat I got. But still NOVID so far, touch wood.

Still. Sobering reminder to be careful as I ramp up my craft selling for the holidays in person. Likely head cold. 🤞
November 9, 2025 at 12:26 PM
Reposted by OhTWIST
cppedsa.bsky.social
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

buff.ly/ofignWQ

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support
A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."
November 3, 2025 at 3:32 PM
Reposted by OhTWIST
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
October 26, 2025 at 2:10 AM
Reposted by OhTWIST
carlf.bsky.social
This is an incredibly insightful episode that ties together lots of the threads of these conditions. I’m going to share it with all the psychologists that run the local “complex conditions unit”…
November 1, 2025 at 12:39 PM
Reposted by OhTWIST
silverpebble2.bsky.social
Just a reminder that questioning or negating a person's autism diagnosis,especially that of a woman*:
1 invalidates that person's lived experience-something that's has been shown to worsen a person's mental health
2 stigmatises what is a neurodevelopmental disability that they've had from birth 1/2
November 2, 2025 at 5:46 PM
ohtwist.bsky.social
Good morning friends. Don't forget to set your clocks back one century if you live in the US today. 🙄✌️

I'm really proud of how my hometown is coming together to help each other out at this time. It's encouraging. ♥️🐝
November 2, 2025 at 5:52 PM
ohtwist.bsky.social
Me, now, scrambling to get fully ready. While other things crop up to waylay me! I can't spin all the plates at once, but I'm sure trying...😜😩🙃🐝✌️
photograbee.bsky.social Photograbee @photograbee.bsky.social · 12d
It's true! You can catch me representing #GenHex Friday from 5-9pm on Halloween at the Alt Night Market featuring #vintage #thrift #Y2K #punk #art #goth 623 SE Washington #pdx #photos #art
October 30, 2025 at 10:48 PM
Reposted by OhTWIST
ph-ph-ph.bsky.social
hEDS

‘Our findings indicate a systemic immune dysregulation, particularly involving the complement system & profibrotic cytokines..
These findings challenge the traditional view of hEDS as solely a connective tissue disorder & support
⬇️
a revised paradigm
that includes innate immune dysfunction.’
October 27, 2025 at 3:32 AM
Reposted by OhTWIST
beeloveds.bsky.social
Wait for meee... (pant pant pant)...
October 30, 2025 at 10:43 PM
ohtwist.bsky.social
Amazing resource, check it out... featuring fellow zebra Dr. Heidi Collins talking about nutrition and EDS and her many slide presentations through the years:
owh.bsky.social Onno Benschop @owh.bsky.social · 19d
@ohtwist.bsky.social

FYI
Just watched an #EDS nutritional approaches for gi issues with eds video, which came with a massive resource in the form of a Google Drive folder:

tinyurl.com/hacmdeds

The video is this: youtu.be/VxChn-pFS-s?...
HACMDEDS Master Copies - Google Drive
tinyurl.com
October 26, 2025 at 2:16 AM
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
October 26, 2025 at 2:10 AM
Reposted by OhTWIST
squeefulraven.bsky.social
This made me giggle, but the sensory overload can be very real!!!

#SpeirGorm #SpéirGorm #EDS #SensoryOverload #Spoonie #EhlersDanlosSyndrome #ChronicIllness
October 24, 2025 at 2:48 PM
Reposted by OhTWIST
ohtwist.bsky.social
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
October 13, 2025 at 4:24 PM
ohtwist.bsky.social
Yup. This is me. A temp overwhelmed and sleepy bee. 😥✌️🐝
photograbee.bsky.social Photograbee @photograbee.bsky.social · 19d
And I'll add some #bees bee-cause, that's what I do. I'm scrambling to prep for next Friday 10/31, plus some standing orders now. While skint. And wholloped. I'm a sleepy bee...
October 23, 2025 at 9:35 PM
Reposted by OhTWIST
cppedsa.bsky.social
Celebrate #InvisibleDisabilitiesWeek Oct 19-25, 2025 with us by checking out our new podcast episode on that very subject!

buff.ly/OhQXbZY

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #POTS #MCAS #Spoonies #Zebras #NEISVoid #Disability #DisCo
Podcast promotional graphic. The background is white with various images and text placed around. In the upper left is a logo reading "EDS Awareness - Ehlers-Danlos Syndromes" with blue and orange coloring. The text nearby says "Presents... PODCAST". A large speech bubble on the right contains the text "EPISODE 1: Invisible Disabilities" in blue letters. Across the center, the text "EDS UNPLUGGED" is written in bold black letters on a diagonal, with a gold ribbon weaving through the letters. There are two images of Black women in black athletic wear: one on the left holding a megaphone, and another on the right standing with a mobility aid and one arm raised. At the bottom right is a picture of Kate Schultz with glasses giving a thumbs up, wearing a purple shirt with colorful images on it. Below the central text, in blue, it says: "With guest: Kate Schultz".
October 19, 2025 at 2:14 PM
Reposted by OhTWIST
petermorley.bsky.social
REMINDER: MEDICARE OPEN ENROLLMENT IS NOW THROUGH DECEMBER 7:

DO NOT FORGET TO:

1) CHECK TO SEE IF YOUR MEDICARE ADVANTAGE PLAN STILL EXISTS.
OR
2) CHECK YOUR PART D RX PLAN & COMPARE OTHER PLANS (TRUMP ADMIN. TOOK AWAY BIDEN SUBSIDIES FOR 2026)

PLEASE HELP GET THE WORD OUT & REPOST!
medicare.gov
Welcome to Medicare
The official U.S. government website for Medicare, a health insurance program for people age 65 or older and younger people with disabilities.
medicare.gov
October 16, 2025 at 11:50 AM
ohtwist.bsky.social
This is so cool. I hope they get well funded soon! Cc @brigantlab.bsky.social @crisprandbeyond.bsky.social
October 15, 2025 at 9:09 PM
Reposted by OhTWIST
tomkindlon.bsky.social
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
October 13, 2025 at 2:19 PM
ohtwist.bsky.social
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
October 13, 2025 at 4:24 PM
Reposted by OhTWIST
ohtwist.bsky.social
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
October 4, 2025 at 8:14 AM
Reposted by OhTWIST
photograbee.bsky.social
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.
October 10, 2025 at 6:05 PM