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ohtwist.bsky.social
OhTWIST
@ohtwist.bsky.social
1.6K followers 1.2K following 570 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
renegaderesearch.bsky.social
We just got published! 🥳

"Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social

www.sciencedirect.com/science/arti...

1/6 🧵
Brainstem dysfunction as a potential etiology of ME/CFS and long COVID: A mechanical basis
The underlying mechanism of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains poorly understood. Given the dramatic increase in case…
www.sciencedirect.com
December 6, 2025 at 10:40 PM
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renegaderesearch.bsky.social
Mechanical Basis findings are integral to #EDS, #Marfans and other connective tissue disorder and disease patients - and issues like #MCAS and mast cell disorders, dysautonomias like #POTS and #OrthostaticIntolerance

Our second presentation on Mechanical Basis issues: youtu.be/lIK7-mBA7Pc?...

3/6
Part 2: Mechanical Basis Model + Brainstem, Keys to Understanding MECFS? Part 2. Nov 1, 2024.
YouTube video by Renegade Research
youtu.be
December 6, 2025 at 10:40 PM
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ka81.bsky.social
#EDS #Pots notice...

Check your D3 and Ferritin Levels.

Iron deficiency without anemia in EDS is basically already anemia. Doctors may miss it because they focus on hemoglobin, but iron stores can be dangerously low even when hemoglobin looks normal....

FfS 🙄
December 3, 2025 at 6:38 PM
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fusionwarrior.bsky.social
My fellow Ehlers-Danlos Zebra needs a hand right now as well, and despite this, took time out of their day to share Jade and my campaign.

Please share this campaign as well, we can only get through this together!

#mutualAid #ChronicIllness #UrgentNeed #DisabilityCrowdFund #EDS #POTS
silverlightzoi.bsky.social series of gj tubes @silverlightzoi.bsky.social · 3d
never raised anything towards this and had to pay for one day so now the goal is $380 for a week tent by tmrw and literally anything i can get for meds and groceries - i have about a day and a half left of my meal shakes for my feeding tube!

ko-fi.com/katimcf
December 6, 2025 at 9:44 PM
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ka81.bsky.social
#EDS Tip if you getting xrays because your joints are subluxed ...when you lay down flat your joints can go back into place and then it shows up nothing. Then you stand up put then under weight and they move again....

You need a stress X-rays/dynamic xray to show the slippage or subluxate. ⬇️
December 7, 2025 at 12:27 PM
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broadwaybabyto.bsky.social
We shouldn’t have to debate who “deserves” food, healthcare and housing.

We should be angry that these things aren’t guaranteed to everyone.

We should be outraged that the wealthy & corporations continue to profit off the misery and suffering of others.
December 8, 2025 at 11:28 AM
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cppedsa.bsky.social
December 3rd, 2025 is International Day of Persons with Disabilities - something folks with EDS and HSD know a lot about, as the majority of us find ourselves disabled, sometimes in multiple ways:

buff.ly/HJxQFBl

#EDS #hEDS #HSD #MCAS #POTS #Disabilities #zebras #MedSky #IDPD
A digital poster with a light orange background and illustrations of diverse people with disabilities. At the top left, there is a circular logo with “EDS Awareness” and “Ehlers-Danlos Syndromes.” In the upper right corner, there is an icon of a hand cursor touching dotted Braille. The central text reads: “December 3, 2025 is... International Day of Persons with Disabilities.” Below the text, there are six illustrated characters representing different kinds of disabilities: A person in a wheelchair holding a blank sign. A person with dark glasses walking with a white cane. A woman with crutches. A person sitting cross-legged, appearing to experience a mental health condition. A person making a hand gesture for sign language. A person wearing a medical face mask. The design uses a bright, inclusive style to convey awareness and support for people with disabilities.
December 3, 2025 at 1:06 PM
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cppedsa.bsky.social
We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy this December in our newsletter...

buff.ly/4HN9zN2

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #POTS #MCAS #MedicalKidnap #FII #Doctors
Memorial tribute graphic featuring two photos of John Ferman at EDS conferences, one in a light purple collared shirt with a name tag, and the other in a black Ehlers-Danlos Syndrome Awareness t-shirt. At the top, large bold text reads "December 2025" and "IN LOVING MEMORY" with two doves and an EDS (Ehlers-Danlos Syndromes) Awareness logo. Below the photos is the name "John Ferman, Founder of Chronic Pain Partners." Decorative elements include two lit candles, two Christmas wreaths with red bows, additional white doves, and a gold arrow with the word "Plus..." at the bottom. The overall color scheme is teal, white, and gold. The design has a gentle, commemorative tone.
December 2, 2025 at 1:14 PM
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sacredsapling.bsky.social
#Disabled Artist #ArtShare! Open to any kind of artist who identifies as disabled, chronically ill, or neurodivergent.

To join:

💙 Share your art and a bit about you (shop links ok)
💙 Alt text if able!
💙 Repost & comment on others
💙 Share this post to boost
💙 No AI!

Abled folks, please boost!
A watercolor painting of an underwater trench with glowing colorful light on it, with text on a white bar reading “Disabled Artist Art Share!”
December 1, 2025 at 4:15 PM
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rooklafetra.bsky.social
In my case, it turned out to be postural orthostatic tachycardia syndrome. It's frequently comorbid with Ehlers Danlos syndrome and mast cell activation syndrome, too.
POTS: Causes, Symptoms, Diagnosis & Treatment
Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from lying down to standing up.
my.clevelandclinic.org
December 2, 2025 at 2:26 AM
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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 · Oct 31
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
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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
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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
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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 · 14d
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
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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
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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
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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
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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 · 27d
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
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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 · 22d
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
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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