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No Human Life Should Be Judged By A Statistic

I do believe that life comes to a full circle, as if some mysterious writer called God were penning down the twists and turns of our life. For me, it all began with a class in Drug Designing, where I was intrigued by the term “Orphan Disease”. Orphan diseases, or rare diseases are diseases which afflict people very rarely. Such is the rarity that almost no government or company is willing to invest in research and development of its cure due to shortage of ‘market’.

Orphan Diseases hence, are almost a poetic injustice. And if you’ve ever noticed, the best of stories are based on injustice and tragedies. We all love tragedies- until they happen to us. And so, I loved the concept of Orphan Diseases- until a surgery a year later left me ailing from one. And now I know exactly what rare diseases are. Rare Diseases – being afflicted by an ailment which has no cure. Waking up everyday hoping you get better while fighting back the fear that you’ll get worse. Hoping for a cure endlessly, day after day after day, but losing hope because ‘it just ain’t profitable’.

Thereafter, life changed. I guess humans are meant to adapt- we all fight for survival. And so hospitals became my second home, and doctors became my closest friends. I restrained myself to severe dietary limitations and the resultant poor health forced me to leave PhD as well as my teaching job. I started preparing for UPSC just as a ‘rest cure’. But just because of this career change, on one ordinary day, I came across a newspaper article about ORDI.

It turns out I wasn’t alone with my rare disease. And now, I am a part of the ORDI team. I aim to bring forward the hidden stories of people who fight to survive everyday. Some stories need to be told, partly because some pain needs to be shared by their characters and partly because some invaluable lessons need to be learnt by their readers. And this my quest.

Look around. Somewhere in the crowd around you, be it your family, friends or colleagues, there is a person who deals everyday with a disease that no one knows of, and quite frankly, no one can ever understand the horror of. Be that pillar of support for them. Because it doesn’t matter that the disease afflicts only 1 in a 1000 people. Everybody, even that one in a thousand deserves a cure. Even that one in a thousand needs support. As ORDI says, “No Human Life Should Be Judged By A Statistic”.

– Parul Jauhari,   Delhi

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