Even as the country focuses on headline-grabbing diseases, hemophilia, a little known blood disorder, is turning out to be a silent killer with over 50,000 people affected. //
World Hemophilia Day is observed every April 17 to promote a global effort to secure appropriate care and treatment for a disease that is the oldest known inherited bleeding disorder caused by a defect in the genes.
"The disease might affect anyone irrespective of social group," said Ditipriya Ghosh, an official with the Hemophilia Federation of India (HFI).
According to Ghosh, nearly 800 to 1,000 people with hemophilia (PWH) are registered with HFI every year.
Hemophilia normally passes on at birth from an affected father to daughter, who then becomes a carrier of the hemophilia gene having every possibility of passing the defective gene on to her children.
"If the children affected with hemophilia are not treated it might lead to disability and possible death. There is also a high risk of life threatening viral infections like HIV, hepatitis B virus (HBV), and hepatitis C virus (HCV) as they are required to take frequent transfusions of blood," said Ghosh.
The disease is not curable, but it can be managed with proper knowledge and treatment, Ghosh told the IANS.
"The only way to reduce hemophilia is through awareness and provision of a life saving drug AHF (Anti Hemophilic Factor)," said Ghosh.
"However AHF is not manufactured in India and has to be imported," said Ghosh, "making treatment extremely costly and impossible at times for a middle class Indian family."
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