The Zebra Alliance Community

Supreme Court’s conservative majority prepared to rule against conversion therapy ban | CNN Politics A majority of the Supreme Court signaled Tuesday it is prepared to rule against Colorado’s ban on “conversion therapy” for minors, with several justices signaling they agree with a licensed counselor ...

We stay away from politics for the most part, but our home state has been taken to SCOTUS over our Conversion Therapy Ban.
If you are trans or are an ally, PLEASE, everyone, BOMBARD SCOTUS WITH PHONE CALLS & EMAILS TO NOT OVERTURN THE BAN. 🏳️‍⚧️🙏🏳️‍🌈🙏🏳️‍⚧️
#transgender #LGBTQ #LGBTQIA #SupremeCourt #Colorado

"My body is a machine that turns thin air into a migraine"

For real 💨😭🤪

#RareDiseases:
#HemiplegicMigraine
Migraine With Brainstem Aura
#AbdominalMigraine
#OcularMigraine (founder of TZA gets these)
#VestibularMigraine
#ThunderclapHeadaches
#OccipitalNeuralgia (founder of TZA gets these)
And there's more.

#headaches #migraines #chronicillness #chronicpain

"When celebrities announce their chronic illness, I feel more seen but mostly I wish they'd say they're able to resume their careers because they accessed diagnoses and treatment that less influential & especially more marginalized people wait decades for or never get"

Too many don't understand why Universal Healthcare is important. Perfect e.g. millions w #ChronicIllness don't work because of being unreliable, and deemed "unemployable". Many wait decades for diagnosis, and even then, can they afford treatment? This needs to be dealt with 🩵🦓🩵

#EDS #raredisease

Colorado family sues AI chatbot company after daughter's suicide: "My child should be here" The Social Media Victims Law Center has filed three lawsuits against chatbot platform Character.AI. Two of them are in Colorado.

#MentalHealth Alert:
If your adolescent child uses Character.AI, PLEASE read this article and uninstall the app + block the website 👉 AI is not being safely used, especially when it comes to our children and predators.

Heads Up: Roblox is another app to uninstall (and block) from your kids devices.

Migalastat Efficient in Female Patients With Fabry Disease Fabry disease is severe and causes considerable burden in female patients and migalastat is efficient in the long term in these patients.

#FabryDisease is severe and causes considerable burden in female patients, according to a study that appeared in the Journal of Medical Genetics. The study also showed that #Migalastat is efficient in the long term in these patients.

Learn more: https://bit.ly/3KB4ahQ

#RareDisease #MedSky #RareSky

😇😅

🤣

We agree, but WAY too many people believe Transgender is a Mental (and/or physical) Illness, therefore can be treated - like (h)EDS/HSD - plus we had trans members & loved ones ask us not to share the study again because of how people misused it to back their phobia/hate. One transman was livid! 🏳️‍⚧️

Over the yrs, we have seen more connection (via studies), and land up with more questions 😉
We stopped sharing the study - Preliminary info only bolsters the mental illness stereotype = Unnecessarily hurts (the mental health of) 🏳️‍⚧️ folks already dealing w enough BS. Unfortunately, progress can hurt 🥺

If you havent yet (and are able) make sure to get out and do some leaf peeping 🍂🍁🍂 Maybe take a walk through fall leaves, and definitely enjoy some deep breaths of fresh air.🚶‍♂️🫁
#chronicillness #EDS #raredisease #invisibleillness #disability #chronicpain #mentalhealth #naturebased #autumn

BTK Inhibitors Overcome Poor Prognosis of CLL With NOTCH1 Mutations BTKis neutralized the adverse prognostic effect of NOTCH1 mutations in chronic lymphocytic leukemia (CLL), a study found.

Bruton tyrosine kinase inhibitors (#BTKis) appeared to offset the adverse prognostic impact of #NOTCH1 mutations in chronic lymphocytic leukemia (#CLL). Study in European Journal of Haematology.

Read more: https://bit.ly/4gTTqam

#RareDisease #Leukemia #Hematology #Oncology #OncSky #RareSky

Next Read > Check out Kit's book 👇😃

DYK:
- The Zebra Alliance Founder lives w Ultra Rapid-Ultradian Cycling #BipolarDisorder 1 🫨🫠👉 Awesome Team + Dx + Rx + Therapy = Things finally Stabilized 🧠🤗
- Ultra Rapid and Ultradian are Considered #RareDiseases

#mentalillness #mentalhealth #books

Dupuytren Contracture: Causes, Symptoms & Treatment Dupuytren contracture is a genetic disorder that makes the tissue under the skin of your palms and fingers thicken and tighten.

For our friends saying, "I have a clawed hand, NF must be why!"
"Clawed Hand" could also be Dupuytren's Contracture.
my.clevelandclinic.org/health/disea...
Two of the (Visible) Symptoms of NF: Tumors and Skin Growths. Those symptoms are not part of Dupuytren's.

Have you heard of Neurofibromatosis: my.clevelandclinic.org/health/disea...
There are three types: #NF1, #NF2, and #Schwannomatosis (SWN) >> "...Genetic condition that affects your nervous system (brain, spinal cord and nerves) and skin."

#neurofibromatosis #chronicillness #raredisease #disability

Could also be (severe) Dupuytren's Contracture 🖐✊️

We wish the answer was that simple 🫠🤪😉😅
📖 Pain & Sleep: www.sleepfoundation.org/physical-hea...

#chronicillness #raredisease #EDS #hEDS #HSD #chronicpain #invisibleillness #disability #meme #healthmeme

These are great suggestions!
Would you add anything to this list?

#chronicillness #raredisease #chronicpain #invisibleillness #EDS #hEDS #HSD #healthcare

Severe ME Artists Project 2025 #MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

"This project was created to allow those with severe ME to share their #artwork with the larger #community and be SEEN! The work featured here includes pieces that were created both before and after people became severely ill.": buff.ly/a8rmo04

via @meactnet.bsky.social
#MECFS #pwME #ChronicIllness

We definitely had sticker shock when we lost mum 😳

We "banked" my sons > he is O neg + cancers run in the fam.

Meme calling out anti-vaxxers for polio hepatitis and tetanus: armed sheriff's about to break down a door, each have an illness written on them >> cheeto holding a door shut represents the illnesses lol

My Oma had Post-Polio Syndrome in her 90s: She had polio in the early 1900s (before there was a vaccine). PPS was VERY painful for her!!!

DYK: Public Land Orgs have almost always had a lot of backlogged work/projects and a need for more support staff, but have lacked funding to do so. This has been exponentially compounded during 2025. Volunteering, Time Outdoors, Physical Activity, and Feeling You Are a Productive Member of Society are proven to improve (mental) health Appease the people who complain that there are people getting benefits who are capable of working. Fact: Unreliability is the main cause of unemployment in the chronic illness community. People are deemed “unemployable” because of it, hence being unemployed.

@thezebraalliance.bsky.social + LUE Outdoors had a crazy idea: Work In-Kind for Public Lands for folks living with lifelong chronic illnesses that make them "unemployable." 👉 www.lueoutdoors.org/s/stories/de...
Benefits of ecological restoration on health: www.sciencedirect.com/science/arti...

What is the Strategic advisory Group of Experts on Immunization (SAGE)? Provides independent, evidence-based recommendations on vaccines. Established in 1999.

SAGE recommendations consider public health impact, cost-effectiveness, programmatic feasibility, and equity.They ensure that vaccines work in real-world settings and reach those who need them the most.

Thanks to expert advice from SAGE, WHO’s vaccine policies help give children lasting protection against serious diseases like measles, polio, diphtheria, tetanus and whooping cough; giving parents confidence their child is protected.

WHO regularly reviews evidence and ensures vaccine policies reflect the latest science. In fact, SAGE bases its recommendations only on publicly available evidence that is carefully assessed and validated using internationally recognized methods.

Did you know that since 1999 an independent group of global experts called the Strategic Advisory Group of Experts on Immunization (SAGE) has been providing WHO evidence-based recommendations on #vaccines?

The deceptive phrase behind Trump's Medicaid purge How the idea of “able-bodied” is abused

If you receive Medicaid or any government assistance, make sure you contact your state congress members and plead with them to do what is right for the chronic illness community - visible illness or not! 🙏⚕️ "Able-Bodied" is an Ableist term 💯 Your State Republicans need to be educated. 📖

What suggestions do you have?
1) We think one of the most important: Make sure the person knows you ❤️ them and deeply care for them
2) Let them know they are wanted in this 🌎
3) (Let them know you will) Truly Listen - w out judgment or suggestions 👂
#MentalHealth #SuicidePrevention

The use of this drug combination can lead to severe sedation, respiratory depression, coma, and even death. These risks are significantly heightened when opioids are mixed with other depressants, such as benzodiazepines.

"Biomarker testing is transforming how rare cancers are diagnosed and treated, opening the door to more precise and personalized care. ...
In honor of #RareCancer Day, experts and patient advocates broke down what biomarker testing is, why it matters, and how to overcome barriers to access."
#Cancer

Super cool!
If in New York + have EDS, definitely check Hyp+Care out next year! Mark your calendar. 🤗 🩵🦓🩵

When you are "unemployable" + are an EDS er living in Trump's USA = 🥺😖 It has cost my father $36k + CO pays for my healthcare + the hours my son spends caring for me... and we still have 3 months left in 2025 🗓
#ehlersdanlossyndrome #chronicillness
You can help us 🩵🦓🩵 linktr.ee/thezebraalliance

Learn how you can be involved in transforming the WHA Resolution on Rare Diseases into concrete action for our communities in Asia Pacific.

🗓 9 October 2025
🕔 9:00 CEST (UTC+2)

✏️ Register here: events.teams.microsoft.com/event/7b6449...