Sindhi Amils have started a project to make their community free of Thalassemia

Next month, the Sindhi Amils will start a unique project to eradicate Thalassemia Major, a blood disorder, in the community.

   Doctors and help-groups working with Thalassemia patients estimate that 40 million Indians carry the Thalassemia trait. Most of these Thalassemia Minors, as they are called, remain healthy. But when two Thalassemia carriers marry, there is a 25 per cent chance that their child may be a Thalassemia Major.

   A child with Thalassemia Major complications cannot produce enough haemoglobin and needs life-long blood transfusions. Mortality rates are high and since the disorder is genetic, the only other option for patients is an expensive surgery to receive a bone marrow transplant from a sibling. Though many states, including Maharashtra offer free blood transfusions for Thalassemia Majors, frequent blood transfusions can lead to other life-threatening complications like accumulation of excess iron in the body. Though one out of every 25 Indians carry Thalassemia traits, the incidence of the gene is higher among some groups like Punjabis, Kutchi Lohanas and Mahars from Maharashtra. Among Sindhis, and Amils in particular, the incidence is as high as one in every six persons. When close relatives in such groups marry, there is a higher chance that their offspring may have the disorder.

Sapna Jeswani of ‘We Care’, a Thalassemia help-group that is assisting the Amils in their project said that when two people with Thalassemia traits marry, there is a 25 per cent chance that their child will be a Thalassemia Minor. “But there is a 25 per cent chance that the child could also be a Thalassemia Major. It is advisable that such couples should not have biological children. It they do have children, a prenatal test can detect if the child may develop the disorder,” said Jeswani. 

   “The reason why a child is a Thalassemia Major is because the parents do not know that they are carriers of the faulty gene,” said Vinay Shetty of Think Foundation, a group involved in creating awareness about the disorder.

   On June 7, residents of the New Gitanjali Co-operative Housing Society, a residential area in Malad with a large number of Sindhis, will be offered a free Thalassemia screening camp by the Khudabadi Amil Panchayat of Bombay, the apex community body of the Amils, a distinct group among the Sindhis. The project, which will later move to other areas like Colaba, Bandra and Khar that have concentrations of Sindhis, is being executed by the Young Amils Circle (YAC) of the Amil Panchayat.

   The demographic group that will be specially targetted for the project will be Sindhis between 18 and 35 years of age. But since more and more youngsters are choosing their partners from other communities, the project will also encompass other groups, says Indrani Malkani, joint secretary of the Amil Panchayat.

   Most people are unaware of the disorder though it affects a large number of Indians. Rashmi Mirchandani, convenor of YAC, said that when she recently spoke to young people volunteering for the project, she was shocked by the ignorance about the disorder. 

   “Out of the 20 or so volunteers who came forward to help us with the project, only two or three had heard of Thalassemia,” she said.

   “Our intention is that every Sindhi should know if they have the Thalassemia trait. It is a one-time test, just a pin-prick away. Our aim is to see our community becomes Thalassemia-free,” said Malkani.

   Hope that the project will make their community Thalassemia-free comes from results of a similar experiment in a South European country with a high incidence of the disorder among its population. By making blood tests mandatory for couples wanting to get married and then discouraging partners with Thalassemia Minors from marrying, the country has almost eradicated the disease.

   “People have to understand that the blood condition is not a stigma, it is a genetic disorder,” said Malkani.