It’s rare disease day. Hi I’m Celia and my disease is so rare its not even listed as a rare disease - fun.
Having a rare disease is like being in a real-life scavenger hunt, except the clues are super cryptic and the treasure map is in Latin. You’re constantly trying to find someone who actually understands what’s happening with you, but it feels like you're the only one who read the secret manual. Doctors take turns playing “guess the disease,” like a weird game show, and you’re just there, hoping they don’t ask you to spin the wheel of symptoms again.
Having a rare disease is like being in an exclusive club, but no one gave you the membership card, and you didn’t even know the club existed until you randomly stumbled in. You’re a VIP, but not the fun kind—more like the “Congratulations, you’re special, but no one knows what’s going on with you” kind.
Having a rare disease is like being a character in a mystery novel where the plot twist is that no one can figure out what your "condition" is—everyone’s like, "Hmm, that’s a puzzler, let’s try some weird science experiment!" But you get to be the star of all those quirky, out-of-the-box treatments, and your medical chart could be considered avant-garde art at this point.
Explaining it to people? Oh, it’s a game of “Guess the Disease”—except, you’re the only contestant. No one really wins, but you get to make all the doctors feel like detectives. They’ll give you a look like they’re about to solve the case, only to find out the real mystery is... you.
So today, just take a moment to pause, reflect and celebrate our rare disease community.
Rare Disease Day is dedicated to raising awareness for the approximately 300 million people worldwide living with rare diseases. Today we highlight the challenges faced by individuals with rare conditions and to advocate for improved access to diagnosis, treatment, and care.
It’s about shining a spotlight on the fact that rare doesn’t mean invisible—and that the people who navigate these conditions are absolute warriors.
Today isn’t just a celebration of survival, but a cheer for progress, understanding, and hope 🎉
#Disability #ChronicIllness #Disabled #RareDisease #RareDiseaseDay
Image description: The image shows Celia, a white female with blond hair tucked behind her ears. She is wearing a blue suit and has her hand rested on her chin as she looks into the distance with a neutral expression on her face.