Tuesday, March 27, 2012

Behind the scenes: 22 years of studying Hemophilia

Hi... I am Mahalingam.P.R, a self-declared geek from God's Own Country - Kerala, India. Living with severe Hemophilia A, my life has been anything but ordinary. Now 22 years old, I am getting my Master's degree in technology. Frequent bleeds have always concerned me, but the "Indian" model has made me stronger, and able to face everything thrown at me.

Born in a middle-class family, affordability of anti-hemophilic factor (AHF) was not the primary concern (even if many are not so lucky). My parents were more concerned about the bleeds itself, rather than the treatment. When we explored prophylaxis, it turned out to be too expensive. To add to that, AHF isn't supplied free of cost in Kerala. So, it has to be an on-demand treatment. Also, fear of drugs have stopped the doctors from suggesting self-infusions.

So, a part of my life has been spent moving to and from the hospital. Even if I don't prefer infusions, it becomes a necessity sometimes, and I often feel bad seeing my dad shell out his hard-earned money on meds. He tried to hide the expense as much as possible, but I managed to "uncover" it. Now I make it a point not to push for infusions.

The Indian model of bleed management stresses RICE, with the largest possible "I". Only if ice packing fails do we go for infusions. And even if we are forced to infuse, we limit the volume as much as possible. When I look back at my life till now, I have got almost all kinds of bleeds (kind of an "experience"). But all these have been the foundation stones on which I have built my life.

Having grown up in a protective shell, moving beyond those limits has always been hard for me. But the foundation stones have held up, and they have given me quite an idea of what I can do, and what I can't. I stopped all kinds of outdoor games and restricted myself to indoor recreation and reading. These restrictions have played a major role in shaping my career. As a matter of fact, I would attribute all successes in my career to Hemophilia. All the "sit and study" routine has helped me develop my knowledge and application skills, ultimately improving my results to a huge degree (scoring 99.5 percentile in the assessment test to enroll for the Master's course has been one of my peak performances so far).

Encountering all the issues thrown at me by my condition has made me strong enough to handle most issues in my life. All my workload during the Master's course has been managed well, with time to spare. I have been able to balance my work and play in a 90-10 ratio (thats the best possible) with little effect on my life. I write my life experiences in detail on my blog so that others can get a feel of what I am going through and can walk a mile in my shoes.

That's when I realize... what would my life have been like if I was as normal as anyone else? Heading the Youth Group of Hemophilia Society Cochin Chapter, I am trying to get the message loud and clear: YOUR LIFE IS IN YOUR HANDS... YOU ARE THE ONE RESPONSIBLE TO MAKE IT THE BEST POSSIBLE... and it is the support you get from the people around you that really matters.

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