Big B joins thalassaemia eradication drive

rajkot: did you know that amitabh bachchan is thalassaemic? how's that possible you may wonder. he doesn't have to undergo regular blood transfusions and is hale and hearty at 60. "my family was spared because even though i am a carrier of thalassaemia minor, fortunately jaya is not. and, so our children are not thalassaemia major," says bachchan in his recent appeal to students of saurashtra university to get themselves screened for thalassaemia minor.thalassaemia is an inherited blood condition in which there is a reduced synthesis of haemoglobin. depending upon its severity it has been classified into two main categories - thalassaemia minor and major. those affected by thalassaemia minor, like bachchan, are silent carriers and look perfectly healthy. but marriage between two thalassaemia minors can produce a thalassaemia major child. it is the thalassaemia major child who requires frequent blood transfusions, besides medicines (iron chelating agents) to prevent excess deposition of iron on vital organs. these medicines are very expensive and administering them is equally painful for the child who is barely able to live through his/her teens. "there is no satisfactory cure for thalassaemia major. only prevention is possible. therefore, before getting married get yourself tested for thalassaemia minor," advises big b, adding "the aim is to build a new saurashtra free from even a single case of thalassaemia major." according to indira jani, who is in charge of counselling under the thalassaemia prevention and control programme, more agonising than the financial and mental anguish of the family of a thalassaemia major child is the uglier reality of "social boycott", particularly of the mother. "we have come across cases when the mother is not accepted either by her in-laws or her parents and is blamed for bringing 'downfall in the family'. despite spending the maximum time attending to her ailing child, she is made the scapegoat of society's ignorance about thalassaemia. all this when we are talking about the international year of women's empowerment," she says. "this is the case in well-to-do families too," agrees dr manorama mehta. people hesitate to get themselves tested fearing social pressures. "in fact, when i was working with the kt children's hospital in rajkot, we barely came across any thalassaemia major child from some high risk communities," she says. poverty, illiteracy, religion and family influences aggravate the problem. "fortunately, the number of those undergoing counselling at the rajkot voluntary blood bank (rvbb) has increased considerably since 1993 when the project was launched," says jani. "the nearest pre-natal check-up centre is in mumbai at kem and bj wadia hospitals. so in cases where both the husband and wife are thalassaemia minor and expecting a child, we at rvbb send them to mumbai for sonography which can detect if the child to be born is thalassaemia major or not. in case it is so, the mother is advised to terminate the pregnancy," she informs. the hospitals send the report directly to the blood bank and the parents learn about the result of the test from us so that we can suggest the follow-up action, she adds. when asked how long it would take before a pre-natal check-up facility for detecting thalassaemia major is set up in gujarat, the director of the programme, dr sushmita dave, says, "for installing any genetic testing equipment, we have to get the government's clearance. we should be getting the facility in six months or in an year."