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The Zebra Alliance Community

@thezebraalliance.bsky.social
402 followers 119 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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Sam(antha) Luegger @samluegger.bsky.social · 09/10/2026
It can be scary. Example: One minute youre showering, the next you find youre almost drowning in said shower because you had a convulsive syncope episode, fell, and knocked yourself out. Many a time partners have found me like this.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 23h
All of that! I would never have known about EDS, Dysautomonia, Craniocervical Instability, among handfuls of other conditions I was diagnosed with at 39: My health issues started before Kindergarten. Responsible "Sickfluencers" actually save lives! 🩵🦓🩵
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A Chronic Voice @achronicvoice.com · 09/10/2026
"Joy is not a finish line. It’s not what comes after the #HealingJourney is complete. #Joy is part of the journey itself. And you deserve to feel it again.": buff.ly/NdetWC0 via tinybuddha #Healing #LifeLessons #grief #loss #ChronicIllness #disability #NEisVoid #BeKind
buff.ly
How to Create Micro-Moments of Joy to Help You Keep Going - Tiny Buddha
How to create micro moments of joy to support your nervous system, build resilience, and feel more alive in hard times.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 09/10/2026
Do you live with Dysautonomia? What do you want people to know about living with it? #Dysautonomia linktr.ee/thezebraalliance #chronicillness #EDS #ehlersdanlossyndrome #hEDS #HSD
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The Zebra Alliance Community @thezebraalliance.bsky.social · 08/10/2026
Fluoride (additive) is just like any other supplement. "For example, too much vitamin B6 can damage nerves, high doses of omega-3s can trigger irregular heartbeat in some people, excess vitamin A in retinoid form can harm the liver, and excessive vitamin D may increase the risk of fractures."
med.stanford.edu
In search of clarity on supplements: Five myths worth busting
Most people don’t need supplements, and ‘natural’ doesn’t always mean safe, according to two Stanford Medicine nutrition experts.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 08/10/2026
Fluoride is a common topic of discussion because of misinformation floating around social media, blogs, and OpEd pieces. "This recent research observed these negative effects at #fluoride levels that were MORE THAN DOUBLE THE AMOUNTS recommended for U.S. community water fluoridation programs."
ysph.yale.edu
Fluoride's Impact on Health| Yale School of Public Health
Learn more about fluoride's impact on health.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 08/10/2026
Fluoride has its pluses and negatives, as does any supplement: Fluoride is not something to be feared. 📰 ysph.yale.edu/research/inf... >> @yalesph.bsky.social
This recent research observed these negative effects at fluoride levels that were more than double the amounts recommended for U.S. community water fluoridation programs.
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Spoonie Threads @spooniethreads.bsky.social · 08/10/2026
Every breast cancer journey is different. We’re grateful to see a local survivor share her story and help bring awareness to the realities of breast cancer and the importance of supporting those going through it. Read her story from KOBI 5: kobi5.com/news/local-b...
kobi5.com
Local breast cancer survivor shares story, hoping to bring awareness - KOBI-TV NBC5 / KOTI-TV NBC2
MEDFORD, Ore. – In honor of Breast Cancer Awareness Month, Medford resident Karen Barrow is sharing her story in hopes of spreading awareness. Just a little over four years ago, in July 2022, Barrow w...
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The Zebra Alliance Community @thezebraalliance.bsky.social · 08/10/2026
I know people who discontinue use because they want to do it on their own. Only way to know is to try. Doesnt work for you? Get back on them.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 08/10/2026
The Zebra Alliance does NOT support using AI for Mental Health help (and personal advice in general) for several reasons, including those mentioned in the Stanford Study. linktr.ee/memesandmusings #AI #mentalhealth #AImentalhealth #ChatGPT #AIregulation #AItherapy
news.stanford.edu
AI overly affirms users asking for personal advice
Not only are AIs far more agreeable than humans when advising on interpersonal matters, but users also prefer the sycophantic models.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 06/10/2026
Do you live with a health condition that makes it hard to consume enough #VitaminA Food Sources? If so, any tips other than vitamin supplements? There are millions of folks who have strict diets due to health conditions, like #Gastroparesis. #healthcare linktr.ee/thezebraalliance #chronicillness
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Memes & Musings @memesandmusings.bsky.social · 06/10/2026
Current situation... ☕️ 😆 #coffeememe #memes #meme #coffeejokes #coffee
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Harvard T.H. Chan School of Public Health @hsph.harvard.edu · 06/10/2026
As the highly visible humanitarian crisis of homelessness reaches critical levels nationwide, the Initiative on Health and Homelessness convened organizations from across Harvard University for the Beyond Shelter conference, a two-day deep dive focusing on practical solutions. bit.ly/4zdXeuV
Howard Koh leads a discussion during the Beyond Shelter eventParticipants at the Beyond Shelter eventPanelists speaking during the Beyond Shelter event
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The Zebra Alliance Community @thezebraalliance.bsky.social · 06/10/2026
It can be hard for people who live with health conditions that limit their ability to eat Vitamin A food sources. Example: Gastroparesis patients
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The Zebra Alliance Community @thezebraalliance.bsky.social · 05/10/2026
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The Zebra Alliance Community @thezebraalliance.bsky.social · 05/10/2026
Are you Immunocompromised? Immunocompromised Examples: 💙 HIV, Cancer, Diabetes, Cirrhosis, Sickle Cell + many GI Diseases. 💙 There are Meds that can cause one to be #Immunocompromised 💙 Donor Recipients/Donors are Immunocompromised #Vaccines #flu #CoVid linktr.ee/thezebraalliance
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The Zebra Alliance Community @thezebraalliance.bsky.social · 05/10/2026
Hot Topic: This article is relatively easy to read (explanation of what's happening). #Plague #Russia linktr.ee/thezebraalliance
cnbc.com
Russia plague: What we know about the suspected case reportedly linked to a lab worker’s death
According to local media reports, as many as 189 people have also been placed under medical observation in Irkutsk in eastern Russia.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 05/10/2026
In America, don't "fear monger." >> It'll backfire because the majority of Americans are SO incredibly obtuse and ignorant. Same struggle as what has happened since 2019: Too many Americans still think CoVid is no biggie, masks are stupid, and going to work/school sick is a.o.k. 😒🤪
cnbc.com
Russia plague: What we know about the suspected case reportedly linked to a lab worker’s death
According to local media reports, as many as 189 people have also been placed under medical observation in Irkutsk in eastern Russia.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 29/09/2026
Pure tea tree oil in the dryer works wonders 👌😍 Just apply it to a fabric sheet, dryer ball, or a rag, and toss it in.
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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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SEDSConnective @sedsconnective.org · 28/09/2026
Survey on how heatwaves affect disabled people . Links in the comments #SEDSConnective #Hypermobility #Neurodivergence
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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 · 27/09/2026
Exhausting also
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The Zebra Alliance Community @thezebraalliance.bsky.social · 25/09/2026
And mentally 🧠 🩵
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The Zebra Alliance Community @thezebraalliance.bsky.social · 25/09/2026
💯 💜🫂💜
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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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The Zebra Alliance Community @thezebraalliance.bsky.social · 24/09/2026
Agreed 🫂💜
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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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The Zebra Alliance Community @thezebraalliance.bsky.social · 23/09/2026
👌😍
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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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The Zebra Alliance Community @thezebraalliance.bsky.social · 22/09/2026
Its the message that matters. ✌️
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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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The Zebra Alliance Community @thezebraalliance.bsky.social · 14/09/2026
💯!
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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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Reposted by The Zebra Alliance Community
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 · 14/09/2026
💯 this! People who not do live with Chronic Pain dont understand what it can do to your mental health: Pain can come out as anger, sadness, and frustration. ... Healthy folks need to truly listen to people with chronic pain so they can be more compassionate and educate others. 🩵🦓🩵
static.klipy.com
Sending Virtual Hug
Alt: Sending Virtual Hug
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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
Seriously! 🥰
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
*GREAT* 😂
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
Grear 📸!
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
For DSM6, things are being totally restructured. DSM will no longer be what it is today—APA is even considering a slight name change. From what I have read, the changes will be for the better, but I will definitely be crossing my fingers lol
npr.org
It's the foundation of psychiatric diagnosis. And it's about to get a makeover
The current edition of the Diagnostic and Statistical Manual is known as the DSM-5. What will the next version be called? That's one of several open questions as the "Bible of psychiatry" goes online.
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The Zebra Alliance Community @thezebraalliance.bsky.social · 13/09/2026
They do it weirdly: CPTSD is "under" PTSD, because the APA (still) treats it like a severe variation of PTSD (not its own distinct diagnosis), same as the dissociative subtype. Buuuut, WHO recognizes CPTSD as its own distinct diagnosis. You know, just to keep things confusing 🤪
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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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