The Zebra Alliance Community
LightNews LightNews
banner
thezebraalliance.bsky.social
The Zebra Alliance Community
@thezebraalliance.bsky.social
340 followers 100 following 850 posts
The Zebra Alliance represents a beacon of hope and solidarity for navigating the challenging waters of Ehlers Danlos Syndrome, Rare Diseases, and Chronic Illness 🩵🦓🩵

Community • Education • Resources • Advocacy & Allies

https://linktr.ee/thezebraalliance
Posts Replies Media Videos
thezebraalliance.bsky.social
#RettSyndrome is a rare and devastating neurodevelopmental disorder that impacts ... ability to speak, walk, eat, and even breathe. Symptoms can begin as early as 6 mos old when parents begin to see their child miss development milestones and lose abilities they had already gained."
#rarediseases
About Rett Syndrome | International Rett Syndrome Foundation
Learn what Rett Syndrome is, how it’s diagnosed, and what it means for those who live with it.
www.rettsyndrome.org
February 14, 2026 at 1:58 AM
Reposted by The Zebra Alliance Community
mgnews.bsky.social
Learn about MG balance: https://bit.ly/4rp5Gnw

#MyastheniaGravis #MyastheniaGravisNews #LivingWithMG #ChronicIllnessJourney #DisabilityLife #Bionews
February 13, 2026 at 10:45 PM
thezebraalliance.bsky.social
Doctor Clair is a great resource for folks with #EhlersDanlosSyndrome and #HSD 🩵🦓🩵 👇
(You can also find her on IG)

EDS Resources: @ehlersdanlos.bsky.social
#EDS #hEDS #raredisease #chronicillness
ehlersdanlos.bsky.social The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 20d
The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. Each type has its own set of features with distinct diagnostic criteria. youtu.be/w62qVQvznYM?...
13 EDS Types Explained: Symptoms, Genetics, and Key Differences
YouTube video by Doctor Clair
youtu.be
February 10, 2026 at 9:56 PM
thezebraalliance.bsky.social
How are you feeling?
🫠🥺😵‍💫😄🫣😎🫩😖☺️

Need help finding mental health resources: We will help you find what you need 🩵

linktr.ee/thezebraalliance
#mentalhealth #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability ##ehlersdanlossyndrome
How's your brain? A bit too gooey LOUD! Haunted At max capacity Too thinky Not thinking enough Fragile Victimized by this cruel world Sunny Do not disturb mode Detached All shook-up Foggy I want a refund (lol) Full of silly songs Sparkling Describe your sad: BIG sad small sad Light sprinkling of sad Rising sad Sharp sad Confusingly beautiful sad Heavy sad Creeping sad Sad on toast
February 7, 2026 at 9:31 PM
thezebraalliance.bsky.social
Looking for a Gift for your little Zebra? We have you covered 😊
Pssst we recently shared this design as a free coloring page here on Bluesky 🩵🦓🩵
#childrensfashion #giftideas #EDS #raredisease #chronicillness #ehlersdanlossyndrome
thezebraalliance - Zebra Alliance Kids
This is a product description
thezebraalliance.creator-spring.com
February 7, 2026 at 3:08 PM
thezebraalliance.bsky.social
How do you handle unsolicited advice?
🩵🦓🩵
#chronicillness #EDS #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #ehlersdanlossyndrome #HSD
cnbc.com CNBC @cnbc.com · 9d
There’s a psychological reason why advice that we didn’t ask for often stings.

So, how do you handle unsolicited advice? The key is to calmly and respectfully acknowledge it, but never surrender your agency, according to one expert. Here are five simple, effective ways to respond.
Psychology expert: Use these 5 phrases to shut down unsolicited advice every time
"Advice will always come, whether you want it to or not," writes Dr. Shadé Zahrai. "Your power lies in how you receive it."
cnb.cx
February 6, 2026 at 7:11 PM
thezebraalliance.bsky.social
We avoid posting politics, but there is no avoiding the generational trauma happening in the US 👉 If you know someone in need of help and resources, we can help connect you with orgs in your area/state. 🩵🦓🩵 Please comment or shoot us a message 🫶
#trauma #mentalhealth #ICE #childhoodtrauma #PTSD
ms.now MS NOW @ms.now · 9d
A Toddler Detained: A 2-Year-Old Girl and Trump’s New Immigration Era.  Jacob Soboroff's latest MS NOW Exclusive.
A Toddler Detained: A 2-Year-Old Girl and Trump’s New Immigration Era
YouTube video by MS NOW
www.youtube.com
February 5, 2026 at 10:15 PM
Reposted by The Zebra Alliance Community
spooniethreads.bsky.social
A real customer shared how our Spoonie Signature Pocket helped hold a chemo infusion ball securely—with easy access during treatment.
Thoughtful design. Real-life use. 💙

#AdaptiveClothing #ChemoSupport #AccessMatters
February 4, 2026 at 2:01 AM
thezebraalliance.bsky.social
Searching for 100% Pure Electrolytes? 💧 TZA uses BUoY Hydration Ocean Hydration Drops.

Searching for a way to bridge some gaps? 🌱 Peek at #BUoY 's phytonutrient-rich wild foods #supplements.

*Ask your Dr before trying new health products*
#chronicillness
💧s are recommended by my 👩‍⚕️⚕️
🩵🦓🩵 sponsor #ad
Shop All Products – Ocean Electrolytes & Rainforest Wild Foods | Buoy
Nutrients in their original forms. Bioavailable and complete support, the way nature intended. No synthetics, sweeteners, isolates or additives. Clinically proven hydration + phytonutrient-rich wild f...
justaddbuoy.com
February 3, 2026 at 10:37 PM
thezebraalliance.bsky.social
Pretty wild discovery!! 🧬

#genetics #chronicdisease #chronicillness #viralinfections #medicalresearch
February 3, 2026 at 4:46 PM
thezebraalliance.bsky.social
THANK YOU!!! Without Passionate & Determined Women, we would not have had the progress that the healthcare industry needed to be where we are today.
🫶👩‍⚕️⚕️👩‍⚕️🫶

#rarediseases #chronicillness #healthcare #research #medicalresearch #healthcareworkers
rarediseaseadvisor.bsky.social Rare Disease Advisor @rarediseaseadvisor.bsky.social · 12d
👩‍⚕️🔬⚕️ Today we celebrate National Women Physicians Day!

Honoring the women advancing medical research, diagnosis, and care, and driving progress in the rare disease community.

Thank you for all you do! 💙

#WomenInMedicine #RareDisease #MedicalResearch #HealthcareLeaders
February 3, 2026 at 4:28 PM
thezebraalliance.bsky.social
HandleStash products are actually great for wheelchairs, walkers, etc.
While they are "universal", they are made for bicycles, so fit will vary depending on brand/model of mobility aid.
Peek at the measurements before buying.
linktr.ee/thezebraalliance
#wheelchair #disability #disabilities #mobility
lueoutdoors.bsky.social LUE Outdoors @lueoutdoors.bsky.social · 12d
Meet & Greet: @handlestash.bsky.social 🚲
"We had one goal: make a cup holder for bikes that ... works. People said we were crazy, and we might be, but the love for our shock absorbing cup holder has been overwhelming."
#biking #bikes #cycling #MTB #mountainbiking #bikerecommendations #outdoorgear
Meet & Greet: HandleStash | LUE Outdoors
Meet Adam and his dreamchild, HandleStash
lueoutdoorsblog.square.site
February 3, 2026 at 3:21 PM
thezebraalliance.bsky.social
How do you explain EDS or HSD to people?
@ehlersdanlos.bsky.social is SUPER helpful for folks trying to explain EDS or HSD to loved ones. 🩵🦓🩵

linktr.ee/thezebraalli...
#EDS #HSD #ehlersdanlossyndrome #ehlerdanlos #hypermobility #chronicillness #raredisease #chronicpain #invisibleillness
Ehlers Danlos Society EDS quick facts Ehlers Danlos Society HSD quick facts A quote by the Zebra Alliance Founder "What you see is a smiling face. What you don't see: Widespread Chronic Pain, Chronic Migraines, Cervical Instability, GI Diseases, Regular Subluxations, Dysautonomia, hunders of Dr's visits... and so much more, none of it good." Just one way we explain EDS to people, because being "bendy" is generally a known quality and far from the only one. (Addition of quote at the end: none is good)
February 2, 2026 at 4:48 PM
Reposted by The Zebra Alliance Community
publichealthpod.bsky.social
The fights about health care spending that culminated in a government shutdown late last year are still ongoing.

@citizencohn.bsky.social details the health care debate happening in Washington right now and what might come next.

🎧 podcast.publichealth.jhu.edu/1003-the-uss...
Promo graphic for episode 1003 of Public Health On Call, titled The U.S.'s Insurance-Based Health Care System. Additional text reads: The health care debate happening in Washington right now, the nuances of universal coverage in other countries, and what come next for health insurance in the U.S.
January 29, 2026 at 3:08 PM
thezebraalliance.bsky.social
Make sure you talk to your doc about all medications as soon as you find out you are pregnant. 🤰🫶 And if you haven't already, and it is your first pregnancy, ask your doc to test for your #Rhfactor to avoid complications, like miscarriage. 🩵🦓🩵
#pregnancy #depakote #depakene #medicationmanagement
February 2, 2026 at 4:23 PM
thezebraalliance.bsky.social
@ehlersdanlos.bsky.social Thank you for everything you do for the EDS and HSD Community!!! 🩵🦓🩵

#EDS #HSD #hEDS #ehlersdanlossyndrome #ehlersdanlos #chronicillness #raredisease
ehlersdanlos.bsky.social The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 15d
The Ehlers-Danlos Society began 2016 as a global organization with one common goal: to change the future for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). www.ehlers-danlos.com/the-ehlers-d...
The Ehlers-Danlos Society Celebrates a Decade of Worldwide Reach and Impact - The Ehlers Danlos Society
www.ehlers-danlos.com
January 31, 2026 at 7:34 PM
thezebraalliance.bsky.social
Happy Caturday 😽
Are you tired/exhausted/in pain? Take a nap, and do not feel guilty for doing so. It is called Self Care. I mean, look at cats: Master nappers haha

linktr.ee/thezebraalliance
#caturday #mentalhealth #health #chronicillness #ehlersdanlossyndrome #EDS #raredisease #memes #selfcare
Art by Katie Abey Cat Fairy "I am the nap fairy and I hereby grant you multiple guilty free naps."
January 31, 2026 at 2:42 PM
thezebraalliance.bsky.social
🧛‍♀️😆

linktr.ee/thezebraalliance
#chronicpainmeme #meme #chronicpain #chronicillness #EDS #invisibleillness #disability #dynamicdisability
"Do you think chronic pain has affected your personality?" Me: (Picture of a vampire) * hissing * By @endohumor
January 29, 2026 at 11:30 PM
thezebraalliance.bsky.social
Have you heard of Prader-Willi Syndrome?
"Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by chronic hunger, growth hormone deficiency, and behavior challenges."
#praderwillisyndrome #PWS #raredisease #rarediseases #chronicillness
January 27, 2026 at 5:16 PM
thezebraalliance.bsky.social
Sounds so much more fun when you put it like that 😄🫠😉

🦓 linktr.ee/thezebraalliance
#chronicillness #raredisease #chronicpain #invisibleillness #EDS #ehlersdanlossyndrome #disability #dynamicdisability #mentalhealth #healthmeme
Having a Chronic Condition but pretending its a hobby: 1) Spending lots of money on paraphernalia (like medication) 2) Reading lots about the hobby 3) Looking at other hobbyists online 4) Not going out because you're busy with your hobby 5) Going to meet ups (docs, therapists, etc) 6) Finding a new hobby (new diagnosis) By @twisteddoodles (not sure which platform)
January 27, 2026 at 5:09 PM
thezebraalliance.bsky.social
Never forget that The Zebra Alliance Community is here for YOU 🩵🦓🩵 Do not hesitate to let us know what support you need, and we will do our best to find you the services and resources you need to live better lives. 🫶
linktr.ee/thezebraalliance
#EDS #ehlersdanlossyndrome #chronicillness #raredisease
The Zebra Alliance Logo
January 26, 2026 at 11:31 PM
Reposted by The Zebra Alliance Community
publichealthpod.bsky.social
Reviewing vaccine safety and effectiveness scientific understanding and good regulatory judgment.

Dr. Jesse Goodman, a former top vaccine regulator and chief scientist at the FDA, explains how the agency came to lead the world in vaccine oversight.

🎧 podcast.publichealth.jhu.edu/1001-vaccine...
Promo graphic for episode 1001 of Public Health On Call, titled Vaccines 101: How FDA Regulates Vaccines. Additional text reads: A former top vaccine regulator explains how the agency came to lead the world in vaccine oversight—and shares his concerns for the future.
January 26, 2026 at 2:32 PM
Reposted by The Zebra Alliance Community
ehlersdanlos.bsky.social
The  EDS ECHO Health Advocacy Program  is a virtual program designed for health advocates who are committed to helping people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Banner for health advocacy featuring the Ehlers-Danlos Society ECHO and Project ECHO logos on the left, the headline “HEALTH ADVOCACY” across the center, and a photo on the right of diverse people stacking their hands together in a gesture of unity and support. Text at the bottom reads “Improving care in EDS & HSD.”
January 23, 2026 at 2:10 PM
thezebraalliance.bsky.social
Another one of those nasty rare connective tissue disorders Zebras all love so much. This one is, Shulman Disease/Syndrome. 🩵🦓🩵
@nordrare.bsky.social
#ShulmanDisease #ShulmanSyndrome #EosinophilicFasciitis #raredisease #rarediseases #chronicillness
January 26, 2026 at 2:36 AM