OhTWIST

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

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

Oh?

More like "owww!" 😢✌️

X Ray of a hand 🖕 "When someone suggests that your past wrong doings caused your chronic illness."

😘🖕

If you know, you know 🩵
linktr.ee/thezebraalliance
#chronicillness #raredisease #disability #dynamicdisability #mentalhealth #invisibleillness #EDS #ehlersdanlossyndrome

🫂♥️💐

This week - oof! And it's only Wednesday. Nobody move! And by move I mean develop any critical illnesses or die. 😢🫂✌️

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

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!

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. 👊✌️💔

I caught it from riding a super crowded bus on Tuesday Nov 4th - something I hadn't done in years, so not surprised. Lesson learned.

Thanks, I'm slowly prevailing, finally. Fever broke more yesterday. Ahhh...🛌

I take that back. I was bed bound yesterday. 😔

Just slithering back out today, oof. ✌️

It me. 🥺

Total capitulation. They folded like cheap suits. I'm sooooo disappointed. 🤬

Me when I hear Schumer say he will keep “fighting”.

🚨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

⚠️

SARS-CoV

🧠

Thank you, yes, thanks to MCAS even a regular cold can be miserable. At least I'm not bed bound by this one, though I am taking it easy.

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. 🤞

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."

AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

buff.ly/ofignWQ

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support

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

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

TY!

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”…

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

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. ♥️🐝

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...😜😩🙃🐝✌️

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.’

Wait for meee... (pant pant pant)...

Amazing resource, check it out... featuring fellow zebra Dr. Heidi Collins talking about nutrition and EDS and her many slide presentations through the years:

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

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