Despite improvement in the medical technologies for the treatment of hemophilia, health experts believe that nearly 80 per cent of Indians with the serious blood disorder are not diagnosed due to the absence of proper diagnostic facilities in the remote areas.
India with nearly two lakh cases is estimated to have the second highest number of patients with hemophilia, a lifelong bleeding disorder that prevents blood from clotting, doctors said ahead of the World Hemophilia day on April 17.
According to Hemophilia Foundation of India, the umbrella body for registration of the patient with the disorder, the cause of hemophilia is the inability of the body to produce the anti-hemophilic factor (AHF) in the required quantity.
There is no known cure for this disorder.
If not diagnosed early, the repeated bleeding into joints, bones muscles may lead to synovitis, arthritis and permanent joint deformities.
The bleeding itself can lead to wasting and atrophy of muscles.
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In a case study from New Delhi-based Sir Ganga Ram Hospital, Nasir Khan, a painter by profession, got to know about hemophilia when his three year-old son hurt himself and started bleeding profusely 10 years ago.
However, he ignored his condition that over the years became severe and caused a permanent joint disability.
Dr Ruby Reshi, head of Pathology department at Government Medical College Srinagar in Jammu and Kashmir, said India is fast progressing in the field of hemophilia treatment but the core problem is of diagnosis.
"With only 20,000 registered patients for hemophilia in the country, there is a huge gap as the total number of people with the genetic disorder is not less than 2,00,000.
"There is a need for diagnostic centres that can help first of all in diagnosis and later make people aware about the seriousness of the health disorder," Reshi told PTI.
"Currently only about 20,000 patients are registered with Hemophilia Federation of India while over 1.5 lakh are still not brought under the registry until diagnosed. Over 80 per cent are undiagnosed. This needs to be bridged," said Dr Nita Radhakrishnan, assistant professor at Noida-based Super Speciality Pediatric Hospital
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