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thezebraalliance.bsky.social
The Zebra Alliance Community
@thezebraalliance.bsky.social
290 followers 86 following 700 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
My hands are super shakey, but its still pretty 🌌💜
There is emerging research about a connection between geomagnetic disturbances and #ChronicIllness flare-ups. Two e.g.'s are Inflammation and Nervous System Dysregulation 🔬🧬🧠
linktr.ee/thezebraalliance
#NorthernLights #EDS #dysautonomia #raredisease
Northern Lights where we are staying
November 12, 2025 at 3:16 AM
thezebraalliance.bsky.social
When you realize you need to do a bunch of updating on your web page, linktr.ee/thezebraalliance, GoFundMe, and catch up on research + get present to-do's done... 🤪🫩🫠🫩🤪 If you can relate 🙋‍♂️🙋‍♀️🙋
#ChronicIllness
#EDS #raredisease #invisibleillness #chronicpain #mentalhealth #healthcare #selfcare
What productive days cost someone with chronic illness An energy crash that lasts 3 days Emotional dysregulation Flare Up Recovery takes days Belief I should be able to do this everyday Realizing I didn't do enough to feel caught up Delayed breakdown Guilt PAIN
November 12, 2025 at 12:52 AM
thezebraalliance.bsky.social
Arterial Fragility is a real thing: vEDS is the subtype more likely to suffer from arterial rupture, but it can happen to any subtype due to collagen abnormalities. EDS is FAR more than being bendy 🩵🦓🩵

#ehlersdanlossyndrome #ehlersdanlos #EDS #vEDS #chronicillness #raredisease
November 11, 2025 at 8:32 PM
thezebraalliance.bsky.social
I think this will resonate with you 🩵🦓🩵
A chronic pain patient can function with a pain level that would incapacitate any other person.
November 9, 2025 at 5:34 AM
thezebraalliance.bsky.social
Acknowledge and be proud of your perseverance, but also take a f@cking nap 🤗😅😉

🎨 @katieabey.bsky.social
#healthmemes #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #mentalhealth
"Allow yourself to have the mother fucking nap" Colorful background with a rainbow "Tired of overcoming intense and exhausting thing but, nevertheless, I persist" Black cat with hiking bag and walking pole -> The Panther of Persistence "When you get tired learn to rest, not to quit" Picture of smiling napping cat with colorful background
November 7, 2025 at 4:51 PM
thezebraalliance.bsky.social
People who do not live with #Disability or #ChronicIllness will never understand what it is to grieve the life you had and the life you worked towards, every day: I used to snowboard, haul rocks & boulders, trail run, work home remodels, make jewelry, paint, find & hold a job + more. No more 😞
"Grief is such a strong part of disability/chronic illness. With each new symptom or increased severity, we lose a little part of who we used to be. Lose our hobbies. Lose parts of our appearance. Lose our dreams and goals. Lose a little part of ourselves."
November 6, 2025 at 5:32 PM
thezebraalliance.bsky.social
Do you have foot issues? Wool-It might be a great product for you! We use it and it's crazy how something so "simple" can have such a positive impact!
We have a small inventory offering of Wool-It Bags and the cardboard Packs. Message us if interested in foot pain and blister relief 🩵🦶🩵
Who needs Wool-It? (100% authentic New Zealand Merino Wool: We know the owner) Anyone with sore feet Anyone who doesnt want sore feet "Thank you, Im a diabetic with really bad feet, bunions, corns, and calluses. Wool-It saves me daily, I wrap my toe with it and stops the pressure...Tried all other foot relief and this is the best allows me to keep playing bowls. Thank you!"
November 2, 2025 at 5:03 PM
thezebraalliance.bsky.social
Happy Halloween to our beloved Zebra Alliance Community! 🧙‍♀️🎃🦓🎃🧙‍♀️

🧡 linktr.ee/thezebraalliance
Happy Halloween to the Zebra Alliance Community! Whether you're in a zebra costume, carving pumpkins, or enjoying treats, Halloween embraces diversity and having fun. Wishing everyone a safe, magical, and Stripe-Tacular Halloween!
October 31, 2025 at 5:52 PM
thezebraalliance.bsky.social
What do you think their reply would be? Honest curiosity. 🙈🙉🙊😉

#ChronicIllness
#raredisease #invisibleillness #dynamicdisability #mentalhealth #EDS #ehlersdanlossyndrome #meme #memes
We couldn't find who made this image 😞 but.. Ring of flowers In the middle is words "You don't look sick" Cool. You don't look like someone who says dumb shit, but here we are.
October 30, 2025 at 6:51 PM
thezebraalliance.bsky.social
If you have wondered about Genetics, give this @ehlersdanlos.bsky.social article a read: www.ehlers-danlos.com/genetics-and...

#genetics #genealogy #chronicillness #raredisease #invisibleillness #disability #ehlersdanlossyndrome #EDS
Pathogenic Variant -> Dysfunctional Protein -> Harmful Trait Benign Genetic Variant -> Functional Protein -> Harmless Traits
October 30, 2025 at 5:15 PM
thezebraalliance.bsky.social
You are doing what is best for your (mental) health, nobody else's. Be proud! ✨️💜🫂💜✨️

Shaming people for taking medication for depression and anxiety shines a light on the bully, not the patient.

Image by the talented @katieabey.bsky.social
#MentalHealth
Colorful Drawing by @katieabey with Ants saying "please dont feel ashamed to be on meds for your mental health"
October 28, 2025 at 3:06 AM
thezebraalliance.bsky.social
There is zero excuse for medical professionals to treat a patient without compassion, but there are legitimate reasons (other than simply being jerks). One issue is Dr - Dr and Dr - Nurse bullying. It is a problem that unfortunately trickles down to patient care 😞 journals.lww.com/jaapa/fullte...
Screenshot of the web page that the link takes you to
October 27, 2025 at 4:30 PM
thezebraalliance.bsky.social
What are some suggestions you have heard?

The top (ableist) suggestions folks with #ChronicIllness hear: Essential Oils, Yoga, Meditation, Healthy Diet, and Exercise.
Do these help? Yes.
Are they a cure? Nope.
#memes #meme #invisibleillness #EDS #ehlersdanlossyndrome #rarediseases
Top: My Chronically Ill Body *Picture of a city on fire* Bottom: "Have you tried essential oils and meditation?" *Will Ferrell Yelling with hands at mouth*
October 25, 2025 at 12:12 AM
thezebraalliance.bsky.social
Learn about the National Disability ID: invisibledisabilities.org/national-dis...
National Disability ID order online: invisibledisabilities.org
October 23, 2025 at 3:55 PM
thezebraalliance.bsky.social
We found this great video about EDS on Lemon8 by @mandyrobertson36 and the vibe is perfect for October 💀🎃💀

#EDS #hEDS #chronicillness #raredisease #ehlersdanlossyndrome #ehlersdanlos
October 21, 2025 at 12:07 AM
thezebraalliance.bsky.social
🧵
Environment and Air Quality https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Light, Rest, and Regulation https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Energy and Recovery https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Original Poster, Shannon M Teeves
October 20, 2025 at 5:54 PM
thezebraalliance.bsky.social
🧵
Additional Factors https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Prepare https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Hydration & Circulation https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Meals and Nutrition https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall
October 20, 2025 at 5:53 PM
thezebraalliance.bsky.social
🧵 The October Slide
Have you noticed your symptoms worsen during fall time? Share your experiences with us 🩵🦓🩵
Image Navigating the October Slide Description of what the October Slide is https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Why It Happens https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall Additional Contributing Factors https://www.eds.clinic/articles/the-october-slide-managing-symptom-flare-ups-in-the-fall
October 20, 2025 at 4:50 PM
thezebraalliance.bsky.social
Or your doctor 🤪
It is frustrating, especially when you live w the uncommon & rare.
Thank You to the people who take the time 🩵

linktr.ee/lueoutdoorsllc
#healthmeme ##chronicillness #raredisease #chronicpain #invisibleillness #disability #dynamicdisability #mentalhealth #EDS #ehlersdanlossyndrome
When your family and friends finally decide to research your diagnosis. Picture of House looking at a computer screen, jaw down, "Unbelievable. How are you still alive?"
October 19, 2025 at 6:19 PM
thezebraalliance.bsky.social
We miss the Obama's 🥺
Charlie brown comic "i hope the great pumpkin goes to prison"
October 11, 2025 at 3:58 PM
thezebraalliance.bsky.social
Good Morning 💛
Tip: Start the day with a laugh 😅

Thank you @chronicillness.bsky.social for always making us 😆
🫶😘

#chronicillness #raredisease #EDS #healthmeme #memes #jokes #hospitals
It's strange to work in a hospital. You know, in one room there's a father holding his son for the first time, in another room there's a son holding his father for the last time. And then in another room there's a guy wity a remote stuck in his anus. It's the circle of life.
October 11, 2025 at 3:41 PM
thezebraalliance.bsky.social
DYK: October is Dysautonomia Awareness Month 🩵
If you live w a form of #Dysautonomia, what is one thing you wish people knew about what its like to live w it? 🫶
Dysautonomia is one of the, "It's not rare. It's just rarely diagnosed." Though, things are improving w education 🤗
#ANSdysfunction #POTS
Dysautonomia Awareness Month is observed globally in October to educate the public and provide support for individuals affected by dysautonomia, a condition affecting the autonomic nervous system's ability to regulate involuntary bodily functions, like heart rate and blood pressure. Started by Dysautonomia International in 2012, the month encourages activities like "lighting it up turquoise," requesting government proclamations, and seeking media coverage to increase understanding and support. (Google) The seven most common symptoms: Difficulty Standing Still Fatigue Lightheadedness Nausea and Other GI Symptoms Brain Fog and Mental Clouding Palpitations or Chest Discomfort Shortness of Breath or Difficulty Breathing But there are more symptoms. The organ systems most commonly affected in dysautonomias are neurological, pulmonary, cardiovascular, urinary, gastrointestinal, secretomotor and pupillomotor. (Info from the Dysautonomia Project. Info Graphic is from Cleveland Clinic.)
October 8, 2025 at 11:51 PM
thezebraalliance.bsky.social
Another that affects vision without pain, Silent Migraines, also called Acephalgic Migraines:
www.verywellhealth.com/silent-migra...
While less common, these are not considered a rare disease.
"What to know about silent migraines" info graphic. Follow link in post to find out the same info that is in the photo.
October 8, 2025 at 3:27 AM
thezebraalliance.bsky.social
For those who do not know what a Hemiplegic Migraine: migrainetrust.org/understand-m...
The word Hemiplegic means Paralysis on one side of the body. Symtpoms: Head to https://migrainetrust.org/understand-migraine/types-of-migraine/hemiplegic-migraine/#page-section-1
October 8, 2025 at 3:02 AM
thezebraalliance.bsky.social
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
"My body is a machine that turns thin air into a migraine"
October 7, 2025 at 4:41 PM