The Zebra Alliance Community

@thezebraalliance

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

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The Zebra Alliance Community@thezebraalliance· 23d

Do you live with #Dyscalculia? What is something you wish people understood? It frustrated my mum that teachers didnt help, and it made my depression and anxiety worse: 16 yrs but only 2 teachers took time to help me—The only two yrs I got an A in #math vs. C/D. linktr.ee/thezebraalliance #meme

$I dont understand why some people use fractions instead of decimals. Its pointless. "Well, look. You gotta draw the line somewhere, or else people will think youre being irrational. But that is beside the point." Fractions and decimals are my enemies!!! 😒😂$

The Zebra Alliance Community@thezebraalliance· 25d

"During #Disability Pride Month, take the opportunity to educate your #workforce about the disabled experience, the #ADA, and disabled people who have carved a space for themselves in a world that has often tried to shut them out and act like they didn't exist." us.specialisterne.com/why-disabili...

Disability Pride Stripes:

Red: Physical Disabilities
Gold: Neurodiveristy
White: Invisible & Undiagnosed Disabilities
Blue: Mental Illness
Green: Sensory Disabilities
Black background: Rage & protest against mistreatment of the disabled community.

The Zebra Alliance Community@thezebraalliance· 25d

July is Disability Pride Month. Pride? "The concept of #DisabilityPride was born out of the #Disability Rights movement and based on intersectional identity politics and social justice." DYK: Bush Jr signed the #ADA and made it law. Trump is taking protections and rights: dds.dc.gov/sites/defaul...

The Zebra Alliance Community@thezebraalliance· Jul 8

Looking for a source to stay up to date on American Healthcare? NPR is one of the news platforms TZA trusts for information: www.npr.org/sections/hea... linktr.ee/thezebraalliance #Healthcare #memes #chronicillness #raredisease #invisibleillness #disability #mentalhealth #EDS #ehlersdanlossyndrome

In Japan, broken objects are often repaired with gold. The flaw is seen as a unique piece of the objects history, which adds to its beauty.
Consider this when you feel broken.

Right Side:
Me
*picture of C-3PO*

I dont think the average healthy person understands that seeking and receiving medical treatment is equivalent to the time and energy of a part time job.

Left
Picture of thumbnail size book
"How much my providers know about my condition."

Right
Person reading a insanely large book
"How much I have to know to keep them from harming me."

We shouldn't have to look sick to receive proper care.

The Zebra Alliance Community@thezebraalliance· Jul 1

Also "I cant take more" Can you relate? Its not only hard, it can be downright scary. Thats definitely not talked about. I've been struggling w this A LOT. linktr.ee/lueoutdoorsllc #mentalhealth #mentalillness #chronicillness #raredisease #chronicpain #invisibleillness #disability #dynamicdisability

No one talks about how hard it is when your mood is constantly switching between "its okay, I dont care. Im fine." and "I dont know how much more I can take"

The Zebra Alliance Community@thezebraalliance· Jun 18

Gotta love relatable posts and memes that give you a giggle 😉😅😄 @chronicillness.bsky.social linktr.ee/thezebraalliance #meme #memes #chronicillness #raredisease #invisibleillness #disability #dynamicdisability #EDS #POTS #dysautonomia

Taking meds is not enough, I need to go back in time and stop my parents from meeting
MyBodyIsTryingToKillMe.com

"How long are you surviving in the apocalypse"
Brother Im on 7 medications a day im cooked

Me: [stands up to fast]
Cardiovascular system: [still sitting on couch] IDK where the fuck you think you're going, but I am not coming with you.

[Shaq "hiding" behind a tree, face between a Y in the trunk]
The flare waiting to attack the minute I do anything fun

The Zebra Alliance Community@thezebraalliance· Jun 16

Something healthy folks dont have to deal with... linktr.ee/thezebraalliance #chronicillness #raredisease #chronicpain #invisibleillness #EDS #ehlersdanlossyndrome #disability #dynamicdisability #mentalhealth #healthcare

"Getting ready for a doctor's appointment should not feel loke preparing for a battle. But for so many chronically ill, that seems to be hiw we are conditioned to feel by constant mistreatment, and frankly, medical abuse." Adriel Rose

The Zebra Alliance Community@thezebraalliance· Jun 16

REALLY, REALLY wish it was easy to explain what its like living w #EDS + (co)morbid conditions. Words can not convey the constant pain—physical & mental; utter exhaustion, and flare-ups; constantly grieving things you can no longer do because of #EhlersDanlosSyndrome + the list goes on. #hEDS #HSD

Screenshot of post about symptom stacking

Photo showing varying symptoms or comorbidities of (h)EDS

Post by @BrandyHerberer about what it feels lile living with hEDS: You can find her on Facebook and Instagram

Old B&W women with extremely "sagging" necks
"How my neck feels with Ehlers-Danlos Syndrome"

The Zebra Alliance Community@thezebraalliance· Jun 14

Relatable 🤪😆 linktr.ee/thezebraalliance #memes #meme #chronicillness #EDS #ehlersdanlossyndrome #HDS #hEDS #rarediseases #healthmemes

The Zebra Alliance Community@thezebraalliance· Jun 14

(Comorbid) Heat Intolerance: It isnt just feeling overwhelmingly hot. 1) Syncope 2) Nausea 3) Swelling 4) Headaches/Migraines 5) Weakness 6) Brain Fog 7) Breathlessness 8) Intense Fatigue 9) Tachycardia 10) Excessive Sweating or lack thereof linktr.ee/thezebraalliance #heatintolerance #dysautonomia

Women looks melted on couch

When you have Heat Intolerance
And the temperature gets above 70 degrees

Woman looking out window

"Once the weather gets warmer, ill be unstoppable.

Unless it gets too warm. Then I'll be stoppable again."

Garfield looking at sign with with his face in a 🚫

When the hot tub says its not for people w underlying medical conditions...
"Hug. I wonder who that's for."

@begonepots (IG) "here's what I mean when I say I have Heat Intolerance"

The Zebra Alliance Community@thezebraalliance· Jun 10

Relatable #ChronicIllness #Memes 🤪😅 linktr.ee/thezebraalliance #meme #healthmeme #chronicillnessmemes #jokes

Barbie that looks haggard
Doc: Well your labs look great, so just work on your dirt and sleep and you'll be just fine.
Me with 89 clearly abnormal symptoms daily [barbie]

The Zebra Alliance Community@thezebraalliance· May 15

We are so behind on EDS & HSD Awareness Month: We are SO sorry!!! 🫣😞 We are going to get caught up on bsky posts ASAP: life just hasn't been super kind to the team this week, but 💪🦓🩵☺️ linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #hEDS

Found this on the Ehlers-Danlos Society Facebook Page: EDS Barbie

The Zebra Alliance Community@thezebraalliance· May 11

Day 10 of #EDS & #HSD Awareness Month: A Question We Get Asked A LOT What is #EhlersDanlosSyndrome? Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders caused by genetic changes that affect collagen, resulting in weakened tissues. #hypermobilityspectrumdisorder

EDS & HSD Awareness Month
Day 10: A Question I Get Asked Often
What is Ehlers-Danlos Syndrome/EDS?
And that is why Ehlers-Danlos Syndrome Awareness Month is so important! Educate those who don't know EDS or Hypermobility Spectrum Disorders 🩵🦓🩵

The Zebra Alliance Community@thezebraalliance· May 10

EDS & HSD Awareness Month 🩵🦓🩵 Day 9: What Are Your Appointment Essentials? 🦓 #EDS & #HSD Resources: @ehlersdanlos.bsky.social linktr.ee/thezebraalli... #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness

EDS & HSD Awareness Month
Day 9: My Appointment Essentials
Alarm so we don't run late.
List(s) so we don't forget anything we want to discuss with the doctor.
Comfortable clothing and shoes.
Water bottle.
Emergency snack.
+ Everyday essentials.

The Zebra Alliance Community@thezebraalliance· May 9

How is your #EDS & #HSD Awareness Month going? Things have been hectic for the TZA team, so we are playing catch-up. We would LOVE to see photos from your Light It Up Orange Monday and Walk & Roll Wednesday 📷 and hear what your answers are to the EDS & HSD Awareness Day Topics! #ehlersdanlossyndrome

Day 5: What Helps You Most
TZA: Listening to our bodies because it helps with improved self-care, which means we can be more productive.
Day 6: Walk & Roll Wednesday
However you move — walking, wheeling, stretching, pacing your day, or supporting someone else.
Day 7: A Good Day Looks Like
TZA: Being able to be productive/have fun and not needing recovery time after.
Day 8: What Does Good Care Look Like
TZA: A doctor who actually listens, asks questions, educates themselves on your conditions, and talks to you like an equal.

The Zebra Alliance Community@thezebraalliance· May 4

Day 3 of #EDS #HSD Awareness Month: Something that may surprise you... 🤔 The founder of TZA keeps a vomit bag in her car + a pot beside her bed because she has chronic nausea, that sometimes results in spontaneous vomiting 🤪 @ehlersdanlos.bsky.social linktr.ee/thezebraalliance #EhlersDanlosSyndrome

* Picture of vomit bag in TZA founders car *
The founder of TZA keeps a vomit bag in her car + a pot beside her bed because she has chronic nausea, that sometimes results in spontaneous vomiting 🤪

Common GI Symptoms in EDS & HSD:
Vomiting
Difficulty swallowing
Acid reflux
Sluggish stomach
Abdominal pain
Sluggish bowel
Difficulty chewing
Nausea
Bloating
Food intolerance
Rectal prolapse

Common and VERY painful for people with (h)EDS and HSD: Gastroparesis

The Zebra Alliance Community@thezebraalliance· May 2

#EhlersDanlosSyndrome & #HSD Awareness: Day 1 – Introduce yourself + share one thing you wish people knew about your journey (to diagnosis). Day 2 – Then and Now: What has changed, for the better, since Dx? (Self) Growth? (Knowledge, Pain/Life Mgmt, Confidence, etc.) #EDS linktr.ee/thezebraalliance

The Zebra Alliance represents a beacon of hope and solidarity for individuals navigating the challenging waters of Ehlers-Danlos Syndrome, Dynamic Disabilities, Rare Diseases, and Chronic Illnesses. This metaphorical alliance draws its name where 'zebra' is used to refer to a rare disease or condition; the term stems from the old medical adage taught to many medical students, "When you hear hoofbeats, think of horses, not zebras," which encourages looking for common conditions rather than rare ones. However, for those living with rare diseases and invisible illnesses, this perspective shifts, highlighting the need for medical professionals and communities to consider and recognize the less common 'zebras' among us.

At its core, the Zebra Alliance is about creating a supportive network that acknowledges the unique struggles faced by those with Ehlers-Danlos Syndrome, (Dynamic) Disabilities, Chronic Illnesses, and Rare Diseases. These conditions often come with a heavy burden, not just in terms of physical health challenges, but also in navigating the healthcare system, finding accurate diagnoses, and accessing appropriate treatments. Moreover, the psychological and social impacts are profound, as individuals and their families grapple with uncertainty, isolation, and often a lack of understanding from society at large.

TZA aims to provide a platform for sharing experiences, resources, and knowledge. It aims to foster community engagement, awareness campaigns, and advocacy efforts to improve healthcare policies and practices surrounding rare diseases. Through such collective action, the alliance not only offers support and solidarity to those directly affected but also works to educate the broader public and healthcare professionals about the importance of recognizing and addressing the complexities EDS/HSD, Dynamic Disabilities, Rare Diseases and Chronic Illnesses.

The Zebra Alliance Community@thezebraalliance· Apr 29

We will see who is "just fine" after we get our hands around their (aka docs) neck... 😒😅😉 linktr.ee/thezebraalliance #chronicillness #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #EDS #ehlersdanlossyndrome #hEDS #HSD

Doc: "Well your labs look great, so just work on your diet and sleep and you'll be just fine."

Me with 89 clearly abnormal symptoms daily:
*Barbie in a hoodie, black makeup smeared, hair is a crazy crimp, crazy smile*

The Zebra Alliance Community@thezebraalliance· Apr 13

Stop Victim Blaming! Enough is Enough! "Don't try to “fix” us, regardless of your intentions. Believe me, we’re trying, and we’ve heard it all before." - Alana Saltz linktr.ee/thezebraalliance #chronicillness #raredisease #invisibleillness #disability #EDS #ehlersdanlossyndrome #mentalhealth #HSD

Stop Victim Blaming.
Chronic illness comes from a highly complex mix of genetics, environmental factors, trauma and more. Being chronically ill is not a personal failure.

The Zebra Alliance Community@thezebraalliance· Apr 6

We love this 💖🌳💖 linktr.ee/thezebraalliance #mentalhealth #chronicillness #inspirationalquotes

Somewhere in the world a tree sprouted the same day you were born and has been growing alongside you and I think this is my favorite nature fact. 🥰

The Zebra Alliance Community@thezebraalliance· Apr 4

If you dont follow @chronicillness.bsky.social you definitely want to 👌😄 One of our faves for giggles 🤗 #memes #meme #jokes #chronicillness linktr.ee/thezebraalliance

When you discover that you're on Gods "Strongest Warriors" listen again next year...

Medically speaking, I am the corner of a fitted sheet that keeps popping back up.

Yoga cured me!

** official sources stated that this is false and misleading

The Zebra Alliance Community@thezebraalliance· Apr 4

We are curious about your thoughts: What do you think of parking and min accessible parking space requirements? 🚗♿️🚗 linktr.ee/thezebraalliance #disability #dynamicdisability #accessibility #accessibleplaces

Current conversations about min accessible parking requirements are interesting.
Our 2 Cents:
1) No matter disability, folks w placards should not have to pay for public parking. They already pay for their placards. Private lots, if you dont use parking, you should not be required to pay for it. That is already common practice.
2) We believe bldgs should not be required to erect parking, but there should be min accessible spaces rqmt for parking lots/garages that are built. >> Negative human traits have proven minimum accessible parking rqmts are a necessity.

The Zebra Alliance Community@thezebraalliance· Apr 3

Tell us about it 🔪🙈 What are the different "You're too young" comments you have heard? linktr.ee/thezebraalli... #chronicillness #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #EDS #HSD #meme #memes #ehlersdanlossyndrome

** youre too young to be [enter symptom] **
Picture of a little boy who looks "crazy" is holding a knife

The Zebra Alliance Community@thezebraalliance· Apr 3

SO frustrating!

Zebra with a cartoon speech bubble that says "100%!"

The Zebra Alliance Community@thezebraalliance· Apr 2

What would you add to this image? 🩵🦓🩵 Chronic Illness Resource Orgs: Chronic Illness Coalition Partnership to Fight Chronic Disease NACDD Good Days linktr.ee/thezebraalliance #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth

Image from @inmyhead_sharon (not sure which platform) about people who are not chronically ill, think folks with Chronic Illnesses arent doing enough to "fix it".

The Zebra Alliance Community@thezebraalliance· Mar 27

Just sayin 🤷‍♀️😅😉 linktr.ee/thezebraalliance #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #memes #jokes

Listen, I'm not saying I will let my chronic illness beat me. Im just saying if I were a horse, I would have been put down years ago.

The Zebra Alliance Community@thezebraalliance· Mar 26

Do you live with Dysautonomia? DYK: There are over 15 different types! For support and resources, take a look at @dysautonomia.bsky.social : www.dysautonomiainternational.org 🩵🦓🩵 #dysautonomia #chornicillness #POTS #syncope #health linktr.ee/TheZebraAlliance

The Zebra Alliance Community@thezebraalliance· Mar 25

We know some of you can relate 😟😬🫣 linktr.ee/thezebraalliance #chronicillness #raredisease #mentalhealth #anxiety #anxietydisorders #socialanxiety #mentalhealthmemes #memes #jokes

*my anxiety after any social gathering*
"Lets review your mistakes!"
[Happy cartoon; green bird is saying this. It look like something you see after doing a digital assignment in elementary school lol]

The Zebra Alliance Community@thezebraalliance· Mar 24

While #EhlersDanlosSyndrome is considered rare, it depends on the subtype, and there are currently 13. DYK: Each patient has their own personal experiences (with complications and levels of pain), symptom degree, comorbidities, and effective treatment. Learn more at @ehlersdanlos.bsky.social #EDS

Infographic with previlancy of the EDS subtypes.

The Zebra Alliance Community@thezebraalliance· Mar 22

"Multi Pass" 🫠 DYK: Having one or more comorbid conditions is very common for people with #ChronicIllness 🩵🦓🩵 Pssst We have a new website we have been working on: linktr.ee/thezebraalliance #eds #ehlersdanlossyndrome #invisibleillness #disability #mentalhealth #chronicillnessmemes #meme #memes