The Zebra Alliance Community

We have not, but we have checked out and used others. 😊 There are quite a few health tracker aps out there—Pretty awesome!

For folks who don't know CareClinic: careclinic.io/features/

#healthtracking #chronicillness #raredisease #EDS #hEDS #healthcare

Our online community, ME Connected, has over 1,400 members supporting each other and discussing topics ranging from tips and tricks on managing ME/CFS, to our popular book club!

Join today:  https://meassociation.org.uk/discord

#pwME #MECFS #LongCovid #PostCovidSyndrome #Discord #OnlineCommunity

Fact: Costs have gone up for millions! Plus, Trump pharmacies arent accepting other Rx discount cards now. 💊💉 Its abs detrimental to the population + its gross (POTUS & admin are profiting from US citizens poor health)! ⚕️ ...This admins so corrupt its almost insane! Until you consider the players...

We often wonder the same! 🩵🦓🩵

SEDSConnective | Hypermobility, EDS & Neurodivergence Charity SEDSConnective is a user-led charity supporting people with hypermobility, EDS/HSD and neurodivergent conditions through community, resources and advocacy.

We are very excited for our members to take part in some very long awaited research. Join us today if you want to know more
www.sedsconnective.org
#autism #adhd #hypermobility #education

This is pretty cool! 🧠
"Depending on style + setting, it can require learning & recalling steps, synchronizing to rhythm, navigating space, adapting to partners + making...adjustments in real time" 🕺💃
🎶 is also good for the 🧠!

linktr.ee/thezebraalliance
#dementia #neurology #alzheimers #brainhealth

We aren't crying, you're crying 🥺🥹 Thank you, @pearljam.com for shining a light on EB and Rare Diseases, and everything your org does for (genetic) research! 🩵🦓🩵 Zebras need more advocates like you, your family, and friends. 🩵🦓🩵

#raredisease #rarediseases #chronicillness

What does World Disease Day mean to you?
For us, it gives us a little hope knowing education and awareness help break stigma, which helps break barriers to care for Zebras 🩵🦓🩵

(Very sorry we spaced the date until now! 🤪)
#raredisease #rarediseases #chronicillness #healthcare

LOVE this! 🌈😍

Period Flu: Why You Feel So Bad Before Your Period Feel tired, achy, and generally “blah” before your period? Yeah, that’s the period flu. We’ll go over why this happens and how you can keep it from being a monthly battle.

Have you heard of Period Flu? Its a type of PMS. Its way more physical than traditional PMS—Usually ends once bleeding begins. Whereas phantom periods are typically caused by hormone imbalances from things like birth control, menopause, endometriosis, and stress.
(Ignore me if you have diagnosis 🤪)

... I may have rolled too much with your comment that many regional areas are not well serviced lol but maybe our conversation will help someone 🙂

a woman is making a face and saying `` so frustrating '' with her hands . Alt: a woman is making a face and saying `` so frustrating '' with her hands .

We feel your frustration! 🙃🙂

a cartoon of two doctors carrying a large globe Alt: a gif of two doctors carrying a large earth globe

Im sure you see major access issues in Australia also. You guys have a lot of non-urban land! About 14% of your pop is in rural areas.
(1.5 mill Aussies reported they are unable to afford care.)

Rural USA 2025 > Approx 58 million people: 1/3 dont drive, and 27 of the 58 are w/out health insurance.

It's a very real problem: Healthcare professionals are too few across the board 🗺 specialists are worse, esp for less common illnesses, and esp outside of major cities/urban areas... A compounded problem 😣

👩🏻‍⚕️🌍👨🏿‍⚕️🌎👩🏽‍⚕️🌏👨🏼‍⚕️

Ehlers-Danlos Syndrome & the Zebras “When you hear the sound of hooves, think horses, not zebras.” This is what medical students are taught. In the medical field, the term "zebra" is used to describe rare diseases or conditions. To avoi...

"What is Ehlers-Danlos Syndrome, and what is up with the Zebras?" Give our post, Ehlers-Danlos Syndrome & the Zebras, a read to find out. Don't worry, it is short & sweet: Some "quick facts." 😉💙🦓💙

linktr.ee/thezebralliance
#ehlersdanlossyndrome #blog #ehlersdanlos #EDS #hEDS #vEDS #cEDS

a duck is running down a road with the words `` lucky duck '' written on it . Alt: a duck is running down a road with the words `` lucky duck '' written on it .

You are so lucky! Man oh man, super wish that was the case for everyone! 😍

Many countries - even some countries with national healthcare - have road blocks:
1) Cost (even w insurance), especially for specialists.
2) Location
3) Transportation
Those seem to be the top 3 roadblocks.

Being disabled is a "damned if you know damned if you dont know" stitch with doctors. The more u research the conditions you live with, the less doctors take you seriously because they think yer self diagnosing. The less u know means they can take advantage of you. Never ending cycle.

If willing, please share your personal experiences with this 🩵 ... our favorite thing, gaslighting 😒🙃

linktr.ee/thezebraalliance
#disability #chronicillness #raredisease #chronicpain #invisibleillness #EDS #ehlersdanlossyndrome #dynamicdisability #mentalhealth #gaslighting #healthcare

a prescription that says " health shouldn 't have a price tag " Alt: a prescription that says " health shouldn 't have a price tag "

Simply commented on some of what you said; an understanding of your frustration 🩵🦓🩵

Access to care is another discussion. One of the biggest issues that Americans (and others) face is access to care ⚕️ The Zebra Alliance Community does what it can at a grassroot level 🌱 ... Research is still needed.

We sure do love Connective Tissue Syndromes here at TZA 😉 We havent shared #WeillMarchesaniSyndrome before: WMS is a connective tissue disorder characterized by abnormalities of the lens of the eye, short stature, brachydactyly, joint stiffness + cardiovascular defects.
#raredisease #chronicillness

I can understand how you feel, but know that folks w Autism are far from the only people w those struggles 🩵 Its a problem across the board: Only the rich can afford to be healthy and receive a timely diagnosis. The rest of us, well, we do our best with what we have—right or wrong (thats the USA). 😞

Post "They should invent joints that dont hurt" Reply "How tf are you smoking them that it hurts." "Oh shit do you mean like bones?" 😂

What tips do you have for painful/achy joints?
• We swear by heating pads even though most prefer ice.
• Self massage
• Compression
• PT

Tips from @clevelandclinic.bsky.social 👉 my.clevelandclinic.org/health/sympt...
#arthritis #kneepain #chronicillness #chronicpain
linktr.ee/thezebraalli...

🤷‍♂️🤷‍♀️🤷

More Awareness for cEDS is our Lifelong Goal for Miles - The Ehlers Danlos Society Miles was born at 36 weeks, after suffering from preterm premature rupture of membranes (PPROM) at 30 weeks. He had noticeably turned in feet at birth but otherwise seemed well.

"When Miles was a few months old, worrying signs started to appear, such as severe bruising on his arms and legs, nose bleeds, and sleeping almost 24 hours a day. He was diagnosed with #ClassicalEhlersDanlosSyndrome at 2 years old." www.ehlers-danlos.com/story/miles-l/

Thought this might give you a giggle...

Its been so stigmatized that we feel guilty giving our bodies the rest it needs 😞🩵🦓🩵

*snorting lines of turmeric powder off of a plate of vitamin C through a straw made of calcium carbonate, whilst standing in downward dog and wearing a jump suit made entirely out of Chakra focusing gemstones* "Am I health yet Margaret? Am I trying hard enough?!!"

Might be the best "all natural treatment" meme ever 😂

linktr.ee/thezebraalliance
#chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme

Do you live with Sickle Cell Disease, or have a loved one who does? What is one thing you wish people knew about SCD?

#sicklecell #sicklecelldisease #raredisease #chronicillness

Ways to Say No

Healthy Boundaries Image from Complex Chronic Pain Illness Support (ccisupport.org.nz):
ccisupport.org.nz/wp-content/u...

Chronic Illness Boundaries - I need rest now so let's continue another time - Please give me space to manage a flare - I can't commit to that right now - I'm staying home today - Today is a no stress day for me - No. @theendocorner (dont know their social platform)

Boundaries are important for your mental and physical health 🩵🦓🩵
What would you add to this?

#chronicillness #chronicillnesses #raredisease #EDS #ehlersdanlossyndrome #hEDS #chronicpain