New Delhi (Health Wire): Despite continuous improvement in the medical technologies for the treatment of serious blood disorders like Hemophilia, health experts believe that nearly 80 per cent of Indians with the disease do not get diagnosed due to absence of proper diagnostic facilities in the remote areas.
According to the doctors
India with nearly 2 lakh cases is estimated to have the second highest number of patients with Hemophilia, a lifelong bleeding disorder that prevents blood from clotting properly. People with bleeding disorders either do not have enough of a particular clotting factor or it does not work properly.
If not treated early, the repeated bleeds into joints, bones muscles may lead to synovitis, arthritis and permanent joint deformities and the bleeds itself along with disuse because of pain can lead to wasting and atrophy of muscles, they said.
In two of the case studies 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.
Similarly, Rana Ayub ignored his treatment for hemophiliaduring his teenage due to long distance between his village and the Azamgarh district hospital in Uttar Pradesh. Now his new-born son has also been diagnosed with the same faith.
Dr Ruby Reshi, head of Pathology department at Srinagar’s Government Medical College, says 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 diagnosis centres that can help first of all in diagnosis and later make people aware about the seriousness of the health disorder,” Reshi said.
Doctors said, though the Government has done enough under the National Health Mission for Hemophilia, the diagnostic centres that should have come up in remote belts of the nation for the disorder’s diagnosis is still absent. While people are least aware of the disease, they do not even bother to receive the treatment.
Hemophilia Foundation of India
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 for short) in the required quantity. There is no known cure for this disorder.
Hemophilia is usually inherited and about one in every 5,000 males is born with the disorder. It cannot be caught or transmitted except through inheritance but can sometimes occur when there is no family history of Hemophilia.
About one third of new cases are caused by a new mutation of the gene in the mother or the child. In these cases, there is no previous history of Hemophilia in the family.
Women who have the Hemophilia gene are called carriers, and they can pass it on to their children. When the mother is a carrier and the father does not have Hemophilia, for each child there is a 50 per cent chance that a son will haveHemophilia and a 50 per cent chance that a daughter will be carrier, according to the foundation.
Dr Rajesh Kashyap, associate professor Hematology department at Lucknow’s Sanjay Gandhi Postgraduate Institute of Medical Sciences said that only expanding the net of diagnostic labs in the districts of the country can solve the problem of Hemophilia in the country.
“Until the diagnostic net is expanded neither hemophilia nor gravity of the problem can be known,” Kashyap said.
Tests for diagnosing Hemophilia
Stating the tests for diagnosing Hemophilia is not much expensive and can be done at district hospitals, Kashyap explained that there are precisely two types of tests –Activated Partial Thromboplastin Time (APTT) Test andProthrombin Time (PT) Test.
“The PT and APTT screenings are blood tests that show if the blood is clotting properly. Currently the only challenge is about screening which has a huge gap in the rural parts of India,” he said.
Dr Nita Radhakrishnan, assistant professor at department of Paediatric Haematology Oncology at Noida-based … said that treatment of Hemophilia has undergone a lot of change in the last one decade.
“Earlier there was a situation when the patient went without medicines and would go for physiotherapy and other treatments as remedies. Today, though every state has been doing well in terms of ensuring treatment for the patients with Hemophilia the major challenge remains diagnosis,” Radhakrishnan said.
“Currently only about 20,000 patients are registered withHemophilia Federation of India while over 1.5 lakh are still not brought under the registry until diagnosed.This needs to be bridged,” she added.