The scariest word in my reports wasn’t ‘rare.’
It was one I couldn’t even pronounce.
Sitting alone at midnight, I realized the hardest part of illness wasn’t pain, it was not understanding the language around it.
This is the story of how those confusing words first trapped me… and then slowly gave me back strength, hope, and control.
Flat on the floor, staring at the ceiling fan, I thought it was the end.
But…
Survival had a plot twist.
It was just another morning, sunlight on the table, coffee in hand, until one word rearranged everything. Rare.
From that moment, an ordinary life split into two worlds: the one everyone sees, and the hidden one my body never lets me escape.
Rare diseases tried to silence me, but instead, they gave me a stronger voice.
Each hospital corridor taught me resilience, and every unanswered question pushed me closer to hope.
What the system doesn’t see, I now share to make it visible.
It started as a joke, an ₹800 Uber surge that made us laugh.
But for rare disease patients, the ride doesn’t stop at hundreds. It climbs into lakhs, and survival itself becomes the costliest journey.
Published with IIM Calcutta, this story asks: who will dare to change the fare?
One horrifying evening walk left me trapped in pain, and 38 pills became my daily routine.
But when medicines failed, I turned to unexpected therapies that slowly rewrote my survival story.
We’ve walked through the shadows of rare diseases, stories of struggle, survival, and silence.
Now the spotlight shifts to national policy: will it finally break the silence, or leave patients waiting at the edge of hope?
When medicines stopped feeling like answers, I was left staring at despair.
But in that silence, I found small rituals that kept hope aliveand turned survival into a source of strength.
When rare illnesses clipped my wings, I finally understood why caged birds sing.
Their song isn’t freedom, it’s survival, a fragile melody rising from the bars of disease.
This is how I found my own voice in captivity.
When rare illnesses stole my favourite flavours, even coffee was replaced by coconut water.
Yet in that heartbreak, I discovered food as medicine and learned how survival can taste different, but still powerful.
IIT Roorkee – We, NSS IIT Roorkee is happy to share a…
When rare illnesses clipped my wings, laughter became my drug‑free therapy.
What began as survival slowly turned into resilience, and each smile carried the power to heal in ways medicine never could.
In the black pages of the pandemic, I set out on a 2200 km road trip with a stranger who spoke no language I knew.
What unfolded on deserted highways wasn’t just survival; it was a series of unexpected lessons that changed how I see life itself.
When Isaac Syndrome struck, it didn’t just steal my career; it caged my body and tested my spirit.
But in that silence, I uncovered therapies beyond medicine, turning pain into awareness and survival into a story worth telling.