To promote a global effort to establish an appropriate care and treatment for a disease "Haemophilia" that is the oldest known inherited bleeding disorder caused by a defect in the genes the World Haemophilia Day is observed every April 17. Haemophilia is an incurable genetic disorder that is characterised by a deficiency of the coagulation factor and by mucosal bleeding. It usually affects
India has some 1,00,000 patients suffering from Haemophilia, experts say. Even as the country focuses on more glamorous diseases, haemophilia, a little known blood disorder, is turning out to be a silent killer with over 50,000 people affected.
People suffering from haemophilia lack certain proteins in their blood because of which their blood doesn't clot and their wounds don't heal. Ditipriya Ghosh, an official with the Haemophilia Federation of India (HFI) explains that the disease might affect anyone irrespective of social group. According to him, nearly 800 to 1,000 people with haemophilia (PWH) are registered with HFI every year.
Haemophiliacs, who cannot afford Rs 6,000-Rs 10,000 a month to buy the clotting factor, would need to have regular blood transfusions. But the greatest risk is that these transfusions can expose them to deadly diseases like HIV/AIDS or Hepatitis A or C. This is sadly the case of one patient, Vineet Oberoi, contracted the HIV/AIDS virus during a routine blood transfusion.
Explaining that both his brother and he were both haemophiliacs. His brother died of AIDS a few years ago, while he was diagnosed with AIDS last year. He explained that he was diagnosed with haemophilia in 1975 and received treatment in an army hospital in Delhi cantonment. Later he was detected HIV positive in 1989, he claims that it was due to the blood transfusion that he and his brother became HIV positive.
Haemophilia may be a rare disorder but as it has such intense health implications it needs for a more than a drastic step to raise awareness by the government and health officials.