OhTWIST
LightNews LightNews
banner
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
Posts Replies Media Videos
Pinned
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
ehlersdanlos.bsky.social
The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study continues to advance understanding of #hypermobileEhlersDanlossyndrome ( #hEDS) and #hypermobilityspectrumdisorder ( #HSD). Read the latest update & key findings! www.ehlers-danlos.com/hedge-study-...
Hedge Study Update - The Ehlers Danlos Society
www.ehlers-danlos.com
October 29, 2025 at 4:26 PM
ohtwist.bsky.social
I've said for years I think #hEDS is polygenic and multi-factorial. This kind of confirms that. I think studying subsets would be more fruitful, personally. #EDS
callirhoe.bsky.social Callirhoé @callirhoe.bsky.social · 28d
A very interesting study to follow for all of us with hEDS/HSD.
My doctor from the French reference center for EDS told me earlier this year they’re becoming less and less certain about a single genetic cause, just like these preliminary findings suggest 👇🏻
www.ehlers-danlos.com/hedge-study-...
Hedge Study Update - The Ehlers Danlos Society
www.ehlers-danlos.com
November 28, 2025 at 8:40 PM
Reposted by OhTWIST
cppedsa.bsky.social
Reprising our best EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations

www.chronicpainpartners.com/eds-holiday-...

#EhlersDanlos #EDS #hEDS #HSD #Hypermobility #Fibro #Fibromyalgia #MECFS #NEISvoid #CPP #Spoonie #Spoonies #Zebras #Holidays
A festive holiday-themed graphic. At the top, there is a gold ribbon banner with a red bow and the words "EDS Holiday Hacks." To the left, a logo reads "EDS Awareness - Ehlers-Danlos Syndromes." Below, a warm dinner table scene features a lit candle surrounded by greenery, with wine glasses and plates in the background. Over this image, text says "Twelve Tips for Setting Yourself Up for Success." At the bottom, a blue strip contains the website address "www.chronicpainpartners.com."
November 24, 2025 at 3:32 PM
Reposted by OhTWIST
cppedsa.bsky.social
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
November 26, 2025 at 1:06 PM
Reposted by OhTWIST
broadwaybabyto.bsky.social
People need to understand how deeply eugenicist this is.

They’re insinuating that if you “take care of yourself” you will be healthy and should get affordable healthcare.

Disabled people can’t “healthy living” their way out of being disabled.

It’s not a moral failing.

We need healthcare too
atrupar.com Aaron Rupar @atrupar.com · 3d
Markwayne Mullin on healthcare: "What the president would like to do is say, hey, if you take care of yourself -- you don't smoke, you don't dip, you're not drinking, you're not overweight, you're working out -- then you should pay less than the guy that obviously is not taking care of himself."
November 25, 2025 at 9:28 PM
Reposted by OhTWIST
cppedsa.bsky.social
Update On Gene Linked to Hypermobile EDS - the Norris Lab published their final study results in 2025:

buff.ly/y0TmObZ

#EDS #hEDS #HSD #Hypermobility #Zebras #Research #Doctors #medicine #Genetics #NEISvoid #Science #MedSky
Promo graphic with teal and orange colors, containing text and a double helix DNA image. At the top left is a label: "BREAKING NEWS", and at the top right is a circular logo "EDS Awareness - Ehlers-Danlos Syndromes". Main headline in large orange box: "UPDATE FROM THE NORRIS LAB ON HEDS GENE" Below, the poster says: "A new study, led by Dr. Cortney Gensemer (an EDS patient herself), marks a real genetic breakthrough in hEDS research. Her study focused on the kallikrein (KLK) gene family, as this family of 15 genes are involved in numerous biological processes."
November 6, 2025 at 3:10 PM
Reposted by OhTWIST
cppedsa.bsky.social
My wife had EDS and did not know it! Why this EDS Awareness site was born... by the late John Ferman, founder:

buff.ly/3SIMf8i

#EhlersDanlosSyndrome #EDS #Hypermobility #HSD #Fibro #Fibromyalgia #Depression #Pain #NEISvoid #MedEd #MedSky #Doctors #Genetics #rheumatology #Nurses
My Wife Had EDS and Did Not Know IT!
We were married for 41 years.  You’d think that after all of that time you would know everything there was to know about a person. –  I knew Carol was a loving person who would do anything she could…
buff.ly
November 23, 2025 at 3:14 PM
Reposted by OhTWIST
photograbee.bsky.social
And I add some with #bees bee-cause you can't get too much Vitamin Bee. Ever. 😉🙃🐝✌️#SundayYellow too.
Close-up showing a honeybee stuck hanging upside down by her proboscis feeding in a large deep yellow sunflower in soft setting sunlight. Jan Groh Photograbee 2025. A single honeybee resting on the dark brown center of a mostly rusty red sunflower with bright yellow petal tips backlit by the sun. It almost fills the frame.
November 23, 2025 at 5:35 PM
Reposted by OhTWIST
2heartswellness.bsky.social
I wrote it in my book & will repeat: #EhlersDanlosSyndrome is going to be as well-known as diabetes within the next decade.

#ChronicIllness #ChronicPain #EDS #HSD #MCAS #POTS #HolisticHealth 💕 #Wellness
Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention?
One day in July 2021, my then 15-year-old daughter Poppy stumbled and fell while walking down some stairs, grazing her knee. It wasn't a serious wound, but over the weeks
buff.ly
November 14, 2025 at 1:17 PM
ohtwist.bsky.social
Oh?
thezebraalliance.bsky.social The Zebra Alliance Community @thezebraalliance.bsky.social · 16d
My hands are super shakey, but its still pretty 🌌💜
There is emerging research about a connection between geomagnetic disturbances and #ChronicIllness flare-ups. Two e.g.'s are Inflammation and Nervous System Dysregulation 🔬🧬🧠
linktr.ee/thezebraalliance
#NorthernLights #EDS #dysautonomia #raredisease
Northern Lights where we are staying
November 19, 2025 at 7:02 PM
Reposted by OhTWIST
thezebraalliance.bsky.social
😘🖕

If you know, you know 🩵
linktr.ee/thezebraalliance
#chronicillness #raredisease #disability #dynamicdisability #mentalhealth #invisibleillness #EDS #ehlersdanlossyndrome
X Ray of a hand 🖕 "When someone suggests that your past wrong doings caused your chronic illness."
November 14, 2025 at 10:51 PM
ohtwist.bsky.social
This week - oof! And it's only Wednesday. Nobody move! And by move I mean develop any critical illnesses or die. 😢🫂✌️
November 19, 2025 at 11:10 AM
ohtwist.bsky.social
And here it is, posted through tears. I'm so sorry to add to our collective grief this week! Ugh. 💔😭🫂

Please take excellent care of yourselves. Our existence is the best resistance and we need community now more than ever. ✌️💐 #EDS
cppedsa.bsky.social Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 11d
We share the following with heavy hearts: In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness

buff.ly/Vm7lTbi

#EhlersDanlosSyndrome #EDS #hypermobility #hEDS #HSD #zebras #Spoonies #NEISvoid #POTS #MCAS #ChronicPain #Support #Autism #ADHD #Genetics
Memorial image featuring two photographs of John Ferman in recent years, shown smiling in both photos. One photo shows him wearing a purple button-up shirt and a lanyard with a name tag. The other photo shows him in a black t-shirt with "Ehlers-Danlos Syndrome Awareness" text and a zebra graphic, wearing a conference badge. Above the photos, the text reads "IN LOVING MEMORY" in large, bold blue letters, with two illustrated tan doves flying near the words. At the bottom, on a solid blue background decorated with subtle flowers, the text states: "John Ferman Founder of Chronic Pain Partners" The white circule EDS Awareness logo
November 17, 2025 at 8:29 PM
Reposted by OhTWIST
broadwaybabyto.bsky.social
Alice Wong fought tirelessly against institutionalizing disabled people.

She understood that we deserve autonomy over our care.

That healthcare is a basic human right and people should receive the support they need to remain in their homes & communities.

Fight for universal healthcare now!
November 16, 2025 at 6:24 AM
ohtwist.bsky.social
So sorry to share we lost the inimitable disability advocate Alice Wong this week, among others.

I'm also sitting on another sad announcement as I wait to coordinate with the family first. Tough week! 😞

Please take care of yourselves. Lots of factors against us. 👊✌️💔
November 17, 2025 at 2:51 AM
ohtwist.bsky.social
It me. 🥺
beeloveds.bsky.social BeeLover @beeloveds.bsky.social · 17d
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