Blood brothers bound by destiny?

no picture Anumeha Srivastava
Se registró el día 17 de junio de 2013
  • 1 Artículo

I do not believe in destiny. Moments later, I ask myself “what is genetic predisposition then”? What is it, to ‘inherit’ the defective genes just like your father, brothers and male cousins had and bleed incessantly (literally)? It is both pre-written and inevitable. Sigh. I am not so sure about my stand on destiny anymore. Haemophilia, the topic of this post and the last clinic I was posted at, is a bleeding disorder. It has a genetic association, like explained above. So a haemophiliac father and a carrier mother (of the defective gene) almost know for sure that their son will have the same disease to a varying degree of severity. Explaining the pathophysiology in the simplest terms, each of our bodies have a little ‘factor army’ that comes in to protect its countrymen (blood cells) at the war site that is injured (ranging from a minor cut to a major mechanical blow) . In the haemophiliacs, this army is either too slow or completely non functional. Thus when they bleed, we need to inject this ‘factor army’ artificially. Otherwise, blood tends to accumulate in unwanted places mostly internally and leaves behind aching muscles and stiff joints. This quite obviously calls for living an increasingly cautious life and refraining from sports/recreation activities that could cause an injury. However, coming to the bright side of things, resilient efforts of the World Federation of Haemophilia in the past 5 decades and in India for 3 decades has made living less gruesome for the sufferers. Complete awareness of the risks and management is allowing haemophiliacs to lead a near normal life. In India now, there happen to be some 76 centers under the Federation. And accessibility of shots of the ‘factor army’ or other radioactive treatment for ailing joints is no longer a Herculean task. Unfortunately, the accessibility doesn’t ensure affordability (the government ideally ensures free factors to the haemophiliacs). And the awareness is increasing only gradually. So while families in America are watching their hemophiliac sons ace baseball and basketball like other normal kids over weekends (Click here), Indian families are still fighting for their rights to have government support for the costly treatment. Click to read the article

Here at the physiotherapy clinic however, the state doesn’t seem so vexing. It’s like a multilingual family of ‘blood brothers’ where the physios (regardless of the age) play the guardians. At most times the inmates are found laughing at their confessions about not following the exercise routines and each others’ laziness. While at others, I found them counseling each other’s worried parents. When 5 year old Mohan (name changed) walked into our physio room with a swollen warm elbow and teary eyes that morning, no one seemed to panic but I. It was my first day at the clinic and I had only read about the condition until then. His mom told me that the injury followed an enthusiastic ball game last evening and that she had rushed him for a shot of factors soon after. Upon indication from the other patients in the clinic, I loaded his tiny arm with ice packs because that’s the best treatment for acute pain. It upset me to think about Mohan’s ailing limb. But before I knew he was watching videos on the Clinic’s desktop and enjoying the attention. Ignorance is bliss. But awareness is heavenly. Mohan is completely aware of what he is suffering with (more than a 20 year old non medical student in India would know if you attempt to ask) and so was his mother. She knows how to identify a bleed, when to take a shot, how to stretch and strengthen the muscles through the daily exercise regimes and how to immobilize a body part when a bleed occurs. But the best of all, each of these haemophiliacs know how to help others find the right hospitals and Physio clinics in India. I’m still not sure about destiny, but I know that knowledge and a sound medical system can let people enlighten their lives in spite of being born with a life threatening genetic disorder.

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