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The Zebra Alliance Community

@thezebraalliance.bsky.social
400 followers 118 following 1.1K posts

The Zebra Alliance represents a beacon of solidarity for navigating the challenging waters of Ehlers-Danlos Syndrome, Rare Diseases, and Chronic Illness. Education • Resources • Advocacy linktr.ee/thezebraalliance

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TWLOHA @twloha.bsky.social · 29/09/2026
Be a part of this campaign by making a donation at twloha.com/SuicidePrevention. Every $45 we raise funds for an hour of mental health support.
Suicide is a health crisis, not something you can love hard enough, or work hard enough, to fix.

A letter from TWLOHA’s Executive Director, Lindsay Kolsch
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Johns Hopkins Bloomberg School of Public Health @johnshopkinssph.bsky.social · 29/09/2026
Flu, COVID, and RSV vaccines help reduce your chance of getting seriously sick—and are essential for protecting people who are immunocompromised. @publichealthpod.bsky.social podcast.publichealth.jhu.edu/a-guide-to-f...
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Memes & Musings @memesandmusings.bsky.social · 28/09/2026
I want to vomit 🤢🤢🤢 "ILLEGAL Title IX" 😡 #LGBTQ #LGBTQ+ #trans #transgender #humanrights #mentalhealth #departmentofeducation #mcmahon linktr.ee/memesandmusings
ed.gov
U.S. Department of Education Formally Rescinds the Biden Administration’s Illegal Title IX Rewrite, Reinstating the 2020 Regulation
Today, the U.S. Department of Education (the Department) formally rescinded the Biden Administration’s illegal regulation implementing Title IX of the Education Amendments of 1972 (Title IX).
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TWLOHA @twloha.bsky.social · 28/09/2026
We’ve been expanding our Peer Support Programs! Explore our different group offerings, and register now at twloha.com/peersupport! These groups are offered in partnership with Peer Support Space and Here Tomorrow.
Find a community through online peer support!
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WHO @who.int · 28/09/2026
Recommended composition of #influenza vaccines for use in the 2027 southern hemisphere influenza season: bit.ly/4ym6ptq
WHO recommends that vaccines for use in the 2027 southern hemisphere influenza season contain the following:

Egg-based vaccines

an A/Missouri/11/2025 (H1N1)pdm09-like virus;
an A/Darwin/1454/2025 (H3N2)-like virus; and
a B/Tokyo/EIS13-175/2025 (B/Victoria lineage)-like virus.
Cell culture-, recombinant protein- or nucleic acid-based vaccines

an A/Missouri/11/2025 (H1N1)pdm09-like virus;
an A/Darwin/1415/2025 (H3N2)-like virus; and
a B/Pennsylvania/14/2025 (B/Victoria lineage)-like virus.
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SEDSConnective @sedsconnective.org · 28/09/2026
Survey on how heatwaves affect disabled people . Links in the comments #SEDSConnective #Hypermobility #Neurodivergence
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ME Association @meassociation.org.uk · 28/09/2026
British Psychological Society ME/CFS Guidelines: September 2026 Update "We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know..." Read the full update: meassociation.org.uk/t2tu #MECFS
meassociation.org.uk
British Psychological Society ME/CFS Guidelines: September 2026 Update - The ME Association
Read the September 2026 update on the British Psychological Society (BPS) ME/CFS Guidelines
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The Zebra Alliance Community @thezebraalliance.bsky.social · 28/09/2026
"Things not to say for $500" Waaaaay too relatable 😏🤣😂🤣 What "suggestions" do you wish people would stop suggesting? 😉 One of my favorites is, "you need to meditate." 🧘‍♀️🧘‍♂️😒😏🫠 linktr.ee/thezebraalliance #chronicillness #raredisease #chronicpain #invisibleillness #disability #EDS
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The Zebra Alliance Community @thezebraalliance.bsky.social · 24/09/2026
How would you explain the effort it takes to stay stable so that people might understand? linktr.ee/thezebraalliance #hypermobility #EDS #hEDS #HSD #ehlersdanlossyndrome #hypermobilityspectrumdisorder #connectivetissue #raredisease
Image by @ehlersdanlosbody showing the difference between typical mobility and hypermobility.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 24/09/2026
The Zebra Alliance is here you 🩵🫂🩵 linktr.ee/thezebraalliance #chronicillness #chronicpain #disability #dynamicdisability #invisibleillness #raredisease #EDS #ehlersdanlossyndrome #mentalhealth
Drawing by @sketchy.whiskers
Cat sitting on a couch, gesturing towards to cushion beside it.
"You dont have to tell me what's wrong. Come sit with me anyway."
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Lunatraktors @lunatraktors.bsky.social · 23/09/2026
What doesn't kill you gives you scars that re-open if you get scurvy.
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Myasthenia Gravis News @mgnews.bsky.social · 23/09/2026
Unpredictable is the only predictable part. #RareDisease
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IDSA @idsainfo.bsky.social · 23/09/2026
What happens to patients when HIV clinical trial funding is delayed? IDSA spokesperson and HIV researcher, Aadia Rana, MD, FIDSA (@aadiamd.bsky.social) explains how the effects can be felt immediately. Watch the full press briefing: bit.ly/4h5UQAp
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The Zebra Alliance Community @thezebraalliance.bsky.social · 23/09/2026
What is your favorite adaptive/mobility aid(s)? Some of mine include braces, heating pads, and hiking poles. #adaptiveaids #chronicillness #chronicpain #disability #dynamicdisability #invisibleillness #EDS #ehlersdanlossyndrome #mobilityaid
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The Zebra Alliance Community @thezebraalliance.bsky.social · 23/09/2026
This Administration must REALLY hate Americans, especially Chronically Ill and Disabled Americans. 😒😞
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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 18/09/2026
This week, we went to Parliament for the Rare4Schools Call to Action event! We are working with Rare4Schools to call for a framework that supports schools to understand and include children with rare diseases. Find out more: www.rare4schools.org #rare4schools #hyperinsulinism
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The Zebra Alliance Community @thezebraalliance.bsky.social · 17/09/2026
Do you live with Marfan Syndrome? If so, what do you wish people knew about Marfan? #marfansyndrome #connectivetissue #raredisease #chronicillness #chronicpain linktr.ee/thezebraalliance
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The Zebra Alliance Community @thezebraalliance.bsky.social · 17/09/2026
EVERY doctor should know this: Share it far and wide 👌😀 linktr.ee/thezebraalliance (found this comment on a FB post) #EDS #ehlersdanlossyndrome #HSD #hypermobilityspectrumdisorder #connectivetissue #raredisease #chronicillness #chronicpain #disability
My doctor said "if you cant connect the issues, think connective tissues" and I just wish someone had thought of that sooner.
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Chronic Illness Humor @chronicillness.bsky.social · 14/09/2026
classic art meme depicting a woman in a red, 19th-century royal gown gesturing pointedly with one hand.

Overlaid on the bottom half of the portrait is a black text box reading: "Trying to explain to people that I don’t want a diagnosis because I want to be sick, I want a diagnosis because I already am sick and would like to be able to name it".
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The Ehlers-Danlos Society @ehlers-danlos.com · 14/09/2026
September is #ChiariAwarenessMonth. Dr. Clair Francomano explains the symptoms of Chiari Malformation, when to seek neurological evaluation, and resources for support: youtu.be/iCayugcfB6U?... #chiarimalformation #PainAwarenessMonth
youtu.be
Doctor Explains Everything You Need to Know About Chiari Malformation
YouTube video by Doctor Clair
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The Zebra Alliance Community @thezebraalliance.bsky.social · 14/09/2026
Feel like its a good time to share, given what is being said about so called #sickfluencers: We talk publicly to educate the healthy; break stigma; widen access to care; for peer support; work to spur research + much more. Fact: Derogatory terms hurt + cause more stigma. #chronicillness #disability
""All you ever talk about is your disability." Researching and advocating for it has kept me alive. It is slowly affecting every part of my life. Im scared, and talking about it helps me accept that my body is breaking down in front of me. The least you could do is listen." - The Chronic Couple
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
DYK: September is Pain Awareness Month If you live with #ChronicPain, what do you wish people without chronic pain understood? linktr.ee/thezebraalliance #chronicillness #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #healthcare
iasp-pain.org
Pain Awareness Month - International Association for the Study of Pain (IASP)
About September is Pain Awareness Month September is Pain Awareness Month, an annual campaign dedicated to increasing understanding of pain, pain management, and the experiences of people living with ...
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
Have you learned to pace yourself? What tips do you have? What has worked for you? All the questions & answers 😉👉 I want all EDS types to share, because all have (co)morbidities. #hEDS #HSD #EDS #chronicillness #chronicpain #invisibleillness #hypermobilityspectrumdisorder linktr.ee/thezebraalliance
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
Poll: Do you think Private Schools who get Public Funding should be required to accept children with disabilities? TZA Opinion: Yes, they should be required to extend the same education to kiddos w disabilities as kiddos without. linktr.ee/thezebraalliance #disability #dynamicdisability #education
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The Zebra Alliance Community @thezebraalliance.bsky.social · 11/09/2026
Who wants to share what its like when you have a hip subluxation? Hip subluxations aren't discussed as much as shoulders, jaws, hands, and knees. Share your experience(s) 🩵🦓🩵 linktr.ee/thezebraalliance #hEDS #EDS #HSD #hypermobility #hypermobilityspectrumdisorder #subluxations #ehlersdanlossyndrome
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The Ehlers-Danlos Society @ehlers-danlos.com · 09/09/2026
"Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. She has also received secondary diagnoses of #POTS, hemiplegic migraines, and primary and secondary #chronicpain." www.ehlers-danlos.com/story/ellian... #PainMonth
ehlers-danlos.com
Elliana’s Story: Growing Up with Classical Ehlers-Danlos Syndrome (cEDS) - The Ehlers Danlos Society
Early Signs & Diagnosis Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. Her diagnosis was the result of a de novo
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The Ehlers-Danlos Society @ehlers-danlos.com · 11/09/2026
Dr. Clair Francomano explains what #SmallFiberNeuropathy is, how it affects the body, and how it is diagnosed. Learn how doctors identify the underlying causes and what treatment options are available, from disease-modifying therapies to symptom management: youtu.be/UGCKkZ9NTts?... #PainMonth
youtu.be
Small Fiber Neuropathy in EDS: Symptoms, Causes, and Diagnosis
YouTube video by Doctor Clair
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The Zebra Alliance Community @thezebraalliance.bsky.social · 11/09/2026
It is unacceptable that the only sources of information I can find about the #VossBarclay disappearance and subsequent death are social media posts; not one known news outlet (that I can find) has written about this tragedy. 🥺🏳️‍⚧️🥺 linktr.ee/thezebraalliance #transman #trans #transgender #colorado
Rest In Power
*pic of Voss Barclay*
Voss Barclay
🎨 The Center on Colfax
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The Zebra Alliance Community @thezebraalliance.bsky.social · 08/09/2026
🍽 Have you been looking for information on the Gastroparesis Friendly Diet? Give this info from @clevelandclinic.bsky.social a read: my.clevelandclinic.org/-/scassets/f... #Gastroparesis linktr.ee/thezebraalliance #chronicillness #nausea #bloating #stomachpain
Screenshot of the first page of document you will find when you follow the Cleveland Clinic link
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Chronic Illness Humor @chronicillness.bsky.social · 08/09/2026
crpl-pnk

hey if you’re disabled or chronically ill & have a hard time standing i want you to know that it’s ok to sit down when able bodied people wouldn’t or aren’t. not just in the context of using a wheelchair but just like. whenever. pull up a stool in front of the stove when you make mac & cheese. kneel on a chair in front of the sink when you’re washing the dishes. going outside to smoke/wait for a cab/whatever? pop a squat on the sidewalk/curb/
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April Smith | The Thriving Spoonie @thethrivingspoonie.com · 08/09/2026
18 practical tips for living with #ChronicIllness and pain — from someone who actually lives it. Caz at Invisibly Me covers everything from pacing and rest to self-advocacy and managing the emotional side of it all. A solid bookmark for the hard days and the okay ones too. buff.ly/D6J5rlq
invisiblyme.com
18 Tips For Living With Chronic Illness, Pain & Disability - Invisibly Me
Living with chronic illness, pain or other disability is an ongoing learning curve. Here are 18 tips for life with chronic conditions.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 06/09/2026
Do you live with EDS? Do you deal with subluxations? If so, what is something you wish people knew? linktr.ee/thezebraalliance #chronicillness #EDS #hEDS #cEDS #aEDS #healthcare
A subluxation is where the bones in a joint slip over each other more than they normally should but do not fully separate or dislocate from each other.They can happen to any joint, but the most common arr jaws, shoulders, hands, and knee cap.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 06/09/2026
This is no bueno! " #CoalWorkers pneumoconiosis, or #blacklung disease, is one of over 200 types of #pulmonaryfibrosis ...classified as an interstitial lung disease." This happens when miners have to cut through (mass amts of) rock to reach coal (because clean coal seams have been depleted).
lung.org
Learn About Coal Workers’ Pneumoconiosis
Coal workers’ pneumoconiosis can develop when airborne coal dust is inhaled. The dust particles remain in the lung where they can cause inflammation or fibrosis (scarring).
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The Zebra Alliance Community @thezebraalliance.bsky.social · 06/09/2026
For folks with #Dysautonomia, heat is heat is heat 🥵 BUT, with that said, do you find one to be worse than the other? I think they equally suck 🫠 (I have lived in humid and dry climates.) DYK: Humid = more chance for heat exhaustion + heat stroke Dry = higher UV exposure + higher chance for cancer
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ProPublica @propublica.org · 05/09/2026
The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead. Use information from your prescription label to locate the factory and see if the plant has a history of inspection violations.
projects.propublica.org
Where Was My Generic Prescription Drug Made? - Rx Inspector - ProPublica
The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead. Use information on your prescription label to locate the factory and see inspection reports.
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Myasthenia Gravis News @mgnews.bsky.social · 04/09/2026
The smallest seed of hope can grow into a mighty tree: nurture it daily. 🌱 #InvisibleIllness
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The Zebra Alliance Community @thezebraalliance.bsky.social · 04/09/2026
Make sure your pharmacy and providers are aware of this recall. #epinephrine #allergies #healthcare #medicinerecall #medicine linktr.ee/thezebraalliance
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A Chronic Voice @achronicvoice.com · 30/08/2026
"What is your favourite daily '#MeTime' #ritual and what does it bring to your day?" — Get the #September #journaling prompts in the post (and for all 365 days of the year!), with a theme of "Space & #Relaxation" this month: buff.ly/FcEyW70 #MondayBlogs #SelfAwareness #SelfCare #ChronicPain
September Journaling Prompts (Theme: Space and Relaxation). What is your favourite daily ‘me time’ ritual, and what does it bring to your day? Get all the prompts on: A Chronic Voice .com
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Myasthenia Gravis News @mgnews.bsky.social · 30/08/2026
Believe in your inner strength: it will carry you through. 🌟 #RareDisease
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The Zebra Alliance Community @thezebraalliance.bsky.social · 30/08/2026
Dont be this guy: No placard or plate— no matter what kind of car you drive— DON'T PARK IN HANDICAP SPACES if you don't have a placard or handicap license plate. -> Only entitled & selfish people park in handicap parking spaces w out a handicap. #disabilities #disability linktr.ee/thezebraalliance
Orange Tesla Cybertruck (that says SpaceX on the side) parked in handicap parking space and they do not have a placard or identifying plate.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 30/08/2026
Do you live with a Gastrointestinal (dys)Motility Disorder? #gastrointestinaldisorders #gastroparesis #chronicillness #raredisease #chronicpain #invisibleillness #EDS #ehlersdanlossyndrome 🦓 linktr.ee/thezebraalliance
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Myasthenia Gravis News @mgnews.bsky.social · 28/08/2026
Move Safely With MG: bit.ly/4aXwrd7 #MyastheniaGravis #AdaptiveExercise #Physiotherapy #MyastheniaGravisNews #Bionews
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TWLOHA @twloha.bsky.social · 28/08/2026
We need you here. Find resources + support any time you need at twloha.com/stay.
Please stay.

For today.
For tomorrow.
For next week. 
For next month. 
For next year.

This is not the end of your story.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 26/08/2026
If you are able to donate blood— esp if you are O neg— please do so. 🙏🙏🙏
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The Zebra Alliance Community @thezebraalliance.bsky.social · 25/08/2026
Humor can make all the difference during an otherwise crap-tastic day 😄😉 Follow @chronicillness.bsky.social for lots of giggles! linktr.ee/thezebraalliance #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #meme #memes
"How long as you surviving in the apocalypse"
Brother im on 7 medications a day im cookedChronic Illness Humor:
Chronically ill people will be like, "I miss you," and then disappear for 5 years.nonbeans post
Me: im feeling so creative today! I wanna deaw, I wanna write, I wanna create! I wanna play games!
My disability: mhmm that great but I have strict plans foe you to have a 6 hours migraine where youre crying in bed and so nauseous you cant eat anything. Soooooo.She was beautiful like a mcflurry machine, yet broken also like a mcflurry machine
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A Chronic Voice @achronicvoice.com · 25/08/2026
"There was a version of me who imagined being fully present for the people I love..Chronic #Hemiplegic #Migraine rewrote that version of me more than once. It doesn’t just change a plan or a to-do list, it changes a life.": buff.ly/m4MUuyM by migrainegirl #ChronicPain #SelfIdentity #NEisVoid
migrainegirl.substack.com
Living with Chronic Hemiplegic Migraine: Turning Pain into Purpose
Using the A Chronic Voice August writing prompts, I reflect on thirteen years of living with Chronic Hemiplegic Migraine and why I continue to turn pain into purpose
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The Zebra Alliance Community @thezebraalliance.bsky.social · 25/08/2026
Inclusive public spaces is an important topic for The Zebra Alliance community. If your community managed to build an inclusive park, what steps happened to get from idea to completion? Your experience may help folks elsewhere. #dynamicdisability #disabilities #disability #EDS #HSD #chronicillness
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Chronic Illness Humor @chronicillness.bsky.social · 20/08/2026
The same
diagnosis
looks different
on everyone.

@whatapainblog
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WHO @who.int · 15/08/2026
"We call on all countries to use the evidence base, use WHO’s advice and guidance and make the best policy decision based on the scientific evidence not on political interference.” - Jeremy Farrar
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The Zebra Alliance Community @thezebraalliance.bsky.social · 11/08/2026
Tip: Never tell someone in the middle of a mania relapse/manic episode to get a grip on themselves. #ThingsNotToSay 🤪🙄🤪 #bipolardisorder linktr.ee/thezebraalliance #bipolar1disorder #bipolar #URCBD1 #mentalhealth #mentalillness
ibpf.org
30 Things Not To Say To Those With Bipolar Disorder - International Bipolar Foundation
I always enjoy reading articles about  what not to say and what to say to someone with a mental illness. I read them and nod my head in agreement, as I can
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