Click to play videoNew Delhi: April 17 has been observed as World Haemophilia Day the world over. It has been chosen as the day to raise awareness about the rare blood disorder.
Five-year-old Aryan Mallik was only eight-months-old when he was diagnosed with haemophilia.
Haemophilia is a rare incurable genetic disorder in males where the blood tracks a vital protein. And as a result, the blood will not clot in case of an injury, leading to excessive bleeding and even death.
Haemophilia cannot be cured but can only be suppressed. However, for the estimated one lakh Indians suffering from the disease, treatment using imported Anti Haemophilic Factor is expensive.
For Aryan's parents it is a constant nightmare as Aryan’s mother Jyoto says,”F9 is not always found and is very expensive and the haemophilia society said that they don’t have it. I remember the day he bled all night because of it.”
Meanwhile, it has been a constant nightmare for one 45-year-old haemophiliac. Unable to afford the high treatment costs, he went for a blood transfusion, only to end up contracting HIV.
With concerns growing about the cure of the disease, both the affected and the concerned agree that solutions need to come fast.
“Some sort of a gene therapy and a solution should come up but at the moment we have nothing,” says senior paeditrician, Max Hospital, Dr Sisir Paul.
“The Government has to take the stand like in the foreign countries. They have to take haemophilia as a disease,” adds Jyoti.
So until that happens one can only hope for the best. And we do not know how long it will take before we put a stop to this ‘bloodshed’.
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