New
Delhi, Apr 18 (PTI) Only 15 per cent of Indians suffering from
Haemophilia-a genetic disorder has been identified while the rest lay
undiagnosed, health experts said today.
Haemophilia is a group of hereditary genetic disorders that impairs the bodys ability to control blood clotting. Even after a minor injury or cut, patients blood does not clot normally due to the absence of clotting proteins called Anti Hemophilia Factors.
If not taken care, recurrent and prolonged bleeding into joints, muscles and other sensitive organs can lead to permanent disability and even death.
"At present, only 15 per cent of the total Haemophilia population has been identified in India and the rest lay undiagnosed. There are about 16,000 patients registered with Haemophilia in the country as yet. However, we suspect that their number could be 7 times more," said Kanjaksha Ghosh, President, Hemophilia Federation of India World.
He was speaking at a workshop on Initiative on Haemophilia Care II? a sensitization programme and the way forward on the occasion of World Haemophilia Day.
Talking about the disease management in Delhi region that focuses on providing treatment to patients in their vicinity, Alok Srivastava, Professor, Department of Haematology, CMC Vellore, said "in Delhi, there are 2,000 registered patients suffering from Haemophilia with many others coming from other states to the national capital for treatment.
"To combat the situation, we are proposing to build more Haemophilia care centres in regions which would create effective mechanism for diagnosis, treatment and bringing timely comprehensive care for Haemophiliacs within their reach," he said.
"We need to address this issue at a national level. We would request government intervention at a macro level by means of funding, expanding infrastructural support and building trained workforce to control blood related disorders including Haemophilia," Ghosh said.
According to a study conducted by the World Federation of Haemophilia (Annual Global Survey), almost 50 per cent of the worlds Haemophilia population lives in India and over 70 per cent of PwH (People with Haemophilia) do not have adequate knowledge or access to treatment. The risk of death from lack of basic knowledge and untreated Hemophilia is very high.
The workshop was inaugurated by BJP parliamentarian Meenakshi Lekhi. PTI PLB SRY PAL SRY
Haemophilia is a group of hereditary genetic disorders that impairs the bodys ability to control blood clotting. Even after a minor injury or cut, patients blood does not clot normally due to the absence of clotting proteins called Anti Hemophilia Factors.
If not taken care, recurrent and prolonged bleeding into joints, muscles and other sensitive organs can lead to permanent disability and even death.
"At present, only 15 per cent of the total Haemophilia population has been identified in India and the rest lay undiagnosed. There are about 16,000 patients registered with Haemophilia in the country as yet. However, we suspect that their number could be 7 times more," said Kanjaksha Ghosh, President, Hemophilia Federation of India World.
He was speaking at a workshop on Initiative on Haemophilia Care II? a sensitization programme and the way forward on the occasion of World Haemophilia Day.
Talking about the disease management in Delhi region that focuses on providing treatment to patients in their vicinity, Alok Srivastava, Professor, Department of Haematology, CMC Vellore, said "in Delhi, there are 2,000 registered patients suffering from Haemophilia with many others coming from other states to the national capital for treatment.
"To combat the situation, we are proposing to build more Haemophilia care centres in regions which would create effective mechanism for diagnosis, treatment and bringing timely comprehensive care for Haemophiliacs within their reach," he said.
"We need to address this issue at a national level. We would request government intervention at a macro level by means of funding, expanding infrastructural support and building trained workforce to control blood related disorders including Haemophilia," Ghosh said.
According to a study conducted by the World Federation of Haemophilia (Annual Global Survey), almost 50 per cent of the worlds Haemophilia population lives in India and over 70 per cent of PwH (People with Haemophilia) do not have adequate knowledge or access to treatment. The risk of death from lack of basic knowledge and untreated Hemophilia is very high.
The workshop was inaugurated by BJP parliamentarian Meenakshi Lekhi. PTI PLB SRY PAL SRY
source : http://indiatoday.intoday.in/story/only-15percent-of-haemophilia-patients-registered-in-india-experts/1/645736.html
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