A person with Hemophilia often bleeds more frequently due to the lack of blood clotting factors in his blood. Such patients often bleed through nose and gums. Even at small injury they have internal bleeds in joints and muscles. Due to lack of good diagnostic facilities and expensive treatment , patients bleed internally resulting in joint deterioration leading to disability.
Children with Hemophilia are unable to attend regular schools or participate in any sports activities. With frequent bleeds in joints and muscle leading to deformities, these people are unable to do the normal daily chores which make them unable to earn their living and become lifelong dependent on others. Holding down a job can be difficult for people with Hemophilia, particularly if target joints from severe hemophilia are an issue.
80% of persons having hemophilia are orthopedically handicapped or are gradually moving towards this because of lack of treatment facilities by the Government. SHC India has been pleading for inclusion of Hemophilia as a Disability under the "Person with Disabilities (Equal opportunities, protection of rights and full participation)Act 1995" enacted by Ministry of Social Justice and Empowerment. The amended Rights of Persons with Disabilities Bill, 2012 is still pending in Parliament for its passage. There are still some concerns about persons with hemophilia which have been left unaddressed in this Bill.
SHC India will continue its advocate with the decision makers to get every person with hemophilia his rightful status.