Latest posts tagged with #ZebraStrong on Bluesky
It's okay to play around with A.i. gif...as long as it's pics of you, right?
🤟😁💜👍
#snowbunny
#zebrastripes
#zebrapower
#zebrastrong
#rarediseaseday
#february28th
#mucklewellssyndrome
#latedeaf
#fall7getup8
#keepgoing
Here's one more #RareDiseaseDay column I wrote for Sarcoidosis News - this one from 2024!
🦓🦋
#RareDisease #community #PatientStories #sarcoidosis #ZebraStrong
sarcoidosisnews.com/columns/shar...
FLaB background with NORD/RDD zebra graphic. Text reads Today is Rare Disease Day Show your stripes for the 1 in 10 Americans with a rare disease
FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? Currently, there are more than 10,000 rare diseases identified.
FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? More than 95% of rare diseases are still without an FDA-approved treatment.
FLaB promo for Kaleidoscope: Rare Disease Stories features a "Rare Disease Day" banner and Bitmoji of me holding print and e-book versions. Text reads Kaleidoscope: Rare Disease Stories Told by the people who live them Proceeds donated to NORD National Organization for Rare Disorders Alone we are rare. Together we are strong.
It's #RareDiseaseDay!
DID YOU KNOW ... ?
🦓 Currently, there are more than 10,000 #RareDiseases identified.
🦓 More than 95% are still without an FDA-approved treatment.
🦓 Proceeds from Kaleidoscope:Rare Disease Stories are donated to NORD
🦋
@rarediseaseday.bsky.social #ShowYourStripes #ZebraStrong
Why Zebras?
A fitting mascot for #RareDiseaseDay
“When you hear hoofbeats, think horses, not zebras.”
That doesn't work for us. There's a lot we can learn, and a lot of work to do.
🦓🦋
buttahflyk.substack.com/p/why-zebras
@rarediseaseday.bsky.social #sarcoidosis #ShowYourStripes #ZebraStrong
Gesehen haben...
Das macht mich seelisch kaputt.
Viel mehr als jedes noch so schwere Krankheitssymptom
#EhlersDanlosSyndrom #hEDS #SFN #SmallFiberNeuropathie #Dysautonomie #rareDisease #TagDerSeltenenErkrankungen #SeltenSindViele #ZebraStrong #kptbs #dis #mentalHealth #notJustsad #mcas #trauma
Von mir abverlangt haben....
#EhlersDanlosSyndrom #hEDS #SFN #SmallFiberNeuropathie #Motilitätsstörung #Gastroparese #slowTransitConstipatiom #Piccline #SelteneErkrankung #rareDisease #TagDerSeltenenErkrankungen #SeltenSindViele #ZebraStrong
#kptbs #dis #dissoziativeIdentitätsstörung #mcas
FLaB background with NORD/RDD zebra graphic. Text reads Today is Rare Disease Day Show your stripes for the 1 in 10 Americans with a rare disease
FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? Any disease affecting fewer than 200,000 people in the U.S. is considered rare.
FLaB background with NORD/RDD Zebra graphics. Text reads Why Zebras? Doctors are often taught "When you hear hoofbeats, think horses, not zebras. The idea is that we should look for the simplest explanation for things. But for people with rare diseases, that simple explanation doesn't cut it. We need our doctors to think beyond horses, beyond common conditions, to the rare diseases like sarcoidosis that affect fewer than 200,000 people in the US, or roughly 1.2 million worldwide. Since they're so rare, most people don't know about them. Medical students don't learn much about them. Researchers don't study them. That all leads to longer times to diagnosis, fewer treatments, and poorer outcomes. That all needs to change. That's why it's so important for us to join together, raise our voices, and raise awareness.
FLaB background with NORD/RDD Zebra graphics. Text reads DID YOU KNOW? Rare diseases affect an estimated 350 million individuals worldwide.
It's #RareDiseaseDay!
DID YOU KNOW ... ?
🦓 Any disease affecting fewer than 200,000 people in the U.S. is considered #rare.
🦓 The zebra has become the mascot for #RareDisease
🦓 #RareDiseases affect an estimated 350 million individuals worldwide.
🦋
#ShowYourStripes #ZebraStrong
Wordle 1713 4/6
⬛⬛⬛⬛⬛
🟨⬛⬛🟨⬛
⬛🟨🟨⬛⬛
🟩🟩🟩🟩🟩
A lil #luck , my **always** second word, and a scoop of the way my brain works. Loads of #fun ! 👻
#wordle #braingames
#fightcognitivedecline #crpssucks
Saturday is #rarediseaseday #zebrastrong #showyourstripes
Texte blanc sur fond noir "Forte comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.
Texte blanc sur fond noir "Fort comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.
En cette dernière semaine du mois de sensibilisation aux maladies rares, je tiens à rendre hommage à la force incroyable des personnes qui en sont atteintes. 🦓👊
#ZebraStrong #ShowYourRare
FLaB promo for Kaleidoscope: Rare Disease Stories features Bitmoji of me holding print and e-book versions. Text reads NEW LOW PRICES Available on Amazon E-book was $15 now $9.99 Paperback was $25 now $19.99 Hardcover was $30 now $24.99 Proceeds donated to the National Organization for Rare Disorders. Alone we are rare. Together we are strong.
In anticipation of #RareDiseaseDay, you can now get Kaleidoscope: #RareDisease Stories at a new, lower price.
🦓 Proceeds donated to National Organization for Rare Disorders (NORD) 🦓
Order your copy at a.co/d/06pXcqzk
~🦋
#PatientExperience #PatientVoice #sarcoidosis #SpoonieSky #ZebraStrong
Diagnosis is a laden topic when you live with a complex, chronic condition.
#Diagnosis #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #ZebraStrong
💕 #Wellness
Screenshot of a tumblr post by byjove. It reads: nobody is faking POTS, fibromyalgia or ME/CFS for attention because nobody gives a fuck if you have POTS, fibromyalgia or ME/CFS. these are three conditions people are always accused of faking online (largely because they’re common chronic illnesses and young women are disproportionately effected by them 😃) and it’s like…..look around bitch. when was the last time you saw a fund for a cure CFS walkathon? you ever see a Google banner for fibromyalgia? these are illnesses that suck to have and that you are often treated like absolute dogshit by the medical community and pop culture at large if you do have them. you don’t get positive attention, or any attention at all, if you’re at home laying down 85% of your life. There are 8,056 reshares and 12,657 hearts
FUCKING. THIS.
People don't fake this shit. They accept these shitty diagnoses because nothing else fits. And they deal with it. And try to make the best of it.
#disabled #actuallydisabled #disability #invisibledisability #eds #heds #zebrastrong #fibromyalgia #pots
Screenshot of a Twitter/X post from user @ThePOTSPostman. It reads: People think you’re “choosing” what to do in a day with chronic illness. They don’t understand you’re budgeting energy like money. If you shower, maybe you can’t cook. If you run errands, maybe you can’t socialize. If you work today, tomorrow you might be bed-bound. One medical exam can mean a flare for a week. If you push once. You pay twice. Every action has a cost that no one else can see.
TL;DR: Because I had to help speed-clean the apartment last night for the inspectors to come over early this morning and interrupt my sleep, I will not be streaming today🥲
#chronicallyill #chronicillness #disabled #disability #hiddendisability #VTuberswithDisabilities #flare #eds #heds #zebrastrong
🟣Request a fundraising pack: www.ehlers-danlos.com/fundraising/...
#TogetherWeDazzle #ZebraStrong #GivingTuesday
Sneezed like 10 times this morning (only been up for like 45 min) and managed to sublux 5 ribs. Well, 3 ribs, technically, but my partner put them back in and a couple came right tf back out again on the next sneeze
isn't EDS fun??
#Disabled #disability #EDS #hypermobile #ehlersdanlos #zebrastrong
Ich bin jetzt offiziell auch ein autistisches 🦓. Und das unten zitierte beschreibt ziemlich genau wie ich zu diesen Diagnosen stehe. #hEDS #ehlersdanlos #autistic #chronicill #zebrastrong #maskup #teamvorsicht
I have not been able to stand up, sit down or walk without pain since last night. It was bad enough I gave up and used a cane for the second time in my life.
I thought it was my hip. Turns out it was my knee. Welcome to the rest of my life.
#hedsawareness #zebrastrong
Brain: Existence is pain
Body: What if we only had 4 hrs of sleep? OwO
#disabled #disability #heds #eds #ehlersdanlos #hypermobile #zebra #zebrastrong #vtuber
Me: Oh, I bashed my shoulder into the wall yesterday trying to escape from that big creepy bug, but I didn't feel a pop or anything so it's probably just bruised.
BF [wiggling my arm a little until my shoulder goes clunk]: You sure about that?
Me: 😅
#eds #heds #zebra #zebrastrong
Screenshot of a post from @ThePOTSPostman on Twitter/X. It reads: Chronic illness has made me angry in ways I never expected. Not just at big losses like my dreams but mostly it’s the small endless reminders that get to me. The projects around the house I can’t finish. Having to sit down in the shower. Heart racing from carrying groceries inside. The food I used to love but now makes me sick. How stairs feel like running a marathon. Seeing doctors every month but getting no where. Everything feels like I reminder of what I can no longer do. It makes you feel helpless because nothing can be done. Same limits over and over. Same symptoms over and over. It’s not always tears for me, it’s mostly anger. Every single day. All thanks to an illness that never lets me forget it’s there.
If you want to know why I never seem happy or energetic, this is why
#Chronicillness #chronicpain #eds #heds #hypermobile #ehlersdanlos #zebrastrong
Hey body, since we're always so fucking exhausted how about you let me sleep in a little more??
No matter when I go to sleep, I wake up at 12:30pm
I'm so tired. I'm in so much pain. I just want to be done
#chronicpain #vtuberswithdisabilities #disabled #eds #heds #ehlersdanlos #zebra #zebrastrong
#HereditaryAngioedema #HAE #RareDisease #PatientStory #ChronicIllness #ZebraStrong #UniqueJourney #Angioedema #FamilyHealth #BioNews #AngioedemaNews
What do you mean sleeping for 12 hrs with a subluxed rib after having a mental breakdown wasn't restful? I don't get it...
#eds #heds #zebra #zebrastrong
What a fantastic NET Models Meeting we have had in Oxford!!! Thank you to everyone who attended and gave such great presentations. There were lots of ideas for future collaborations. Well done to Phoebe Yuen Chan for winning best PhD presentation #collaboration #nets #zebrastrong #patients #research
I genuinely thought my days of physical art were over. I have EDS, and it leaves me with the wibblywobbles and spasms- both things that make detailed work hard.
Better drugs, practice, and patience, and I'm really pleased with how my sketches have been turning out 🥹
#eds #zebrastrong #artist #art
"When you hear hoofbeats, think horses, not zebras."
A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra!
#ZebraStrong #RareDiseaseAwareness
#PMPZebra
Today's chronic illness complaint is losing weight is fucking hard and I'm mad about it.
😠
#spoonielife #zebrastrong #eds
Tough lady!
tinyurl.com/3bwvpvz4
~~~
#Athletes #EDS #hEDS #MCAS #POTS #HolisticHealth #YesYouCan #ZebraStrong
💕 #Wellness
Living in tune with the seasons can be beneficial...what do you think?
#BlogPost #SeasonalLiving #EDS #hEDS #MCAS #POTS #SelfCare #HolisticHealth #ZebraStrong 💕 #Wellness
