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Awareness Program

Even the World Federation of Hemophilia has admitted that awareness about the nature of hemophilia is very poor among the general population. The level of awareness is not very encouraging among the medical fraternity either. It took about eleven years (from 1953 to 1964) for the founder of the HSBC, the late Mr. S P Ramchander to have his condition confirmed as Hemophilia despite several rounds of visits to some major hospitals in Bangalore, Chennai, Mumbai and Calcutta. Ultimately he had to go to London to have the assay test done for final confirmation. Such long delays spell disaster for the patient as the untreated bleeds cause much damage to the joints and muscles.

The rarity of occurrence of the disorder, namely one in ten thousand makes it a lesser known disease among the people and also among a sizeable number of doctors. Facilities for diagnosis and treatment also shrink correspondingly. Prof Alok Srivastava, Dept of Haematology, Christian Medical College Hospital, Vellore, a well known authority on Hemophilia care says that even though 9000 people with  hemophilia have been diagnosed in India it is still less than 15% of the total expected number. This is because awareness is low, diagnostic facilities are limited and factor concentrates for treatment are scarce. Creating awareness therefore claims the top most priority among our programmes.

Events like Walkathon led by famous athletes or similar events or functions with the participation of Ministers or VIPs are held every year as part of the celebration of World Hemophilia Day. Dance or Music performance by popular artistes, Movie Shows etc are also organized with the help of sponsors by the chapter and these events are well attended by the public and are also covered by local media, both English and Kannada. In addition, journalists from the local press come for interview on the activities of the society with the General Secretary and these are published in the local newspapers. All these create awareness about the nature of hemophilia with the result the society’s membership has grown from about 300 to around 600 in a matter of three years.

To sum up, the chapter is continuing its efforts

  • to create awareness about hemophilia
  • to identify a large number of undiagnosed cases out there in the general population
  • to explore possibilities of financial and other help from Government, Business establishments, Voluntary and Charitable bodies and general public


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    Walk-a-thon in Cubbon Park with Health Minister Ramachandra Gowda

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    Asst. Commissioner Disabilities, Mr.Pradeep Kumar at the World Hemophilia Day in Cubbon Park

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    Celebrities – Hockey Players Ashish Ballal and Dhanraj Pillai at World Hemophilia Day celebrations

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    Ms.Dorthe from DANIDA

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    Mr.Chelluvurayasamy, Health Minister

 

 



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