Little did Bhaskar Dutta, President of Ishanya Youth (a north-east youth association), know what thalassaemia was, till he met 77-year-old Jasmine Majethia and Dr Nita Munshi. Inspired with their work to save children dying from thalassemia, Dutta soon started making hospital visits and learnt more about this genetic blood disorder.
So much so, that now Ishanya Youth, along with Thalassaemia Society of Pune, has planned a musical event featuring noted Assamese singer Zubeen Garg to create awareness about this disorder on January 16 at Irish Village in Koregaon Park. ‘Tied for Life’ is the theme of Anthem-2016, which is the association’s annual festival.
“We decided to raise our voice to prevent thalassaemia,” says Dutta, explaining that Ishanya Youth is a socio-cultural organisation comprising students and working professionals from the north-east. Anthem-2016 would promote cultural integration between Maharashtra and the north-east, and hence it would introduce the theme of preventing thalassaemia.
“The number of children living with thalassaemia is increasing,” Bhaskar said. His meeting with Majethia, a former chairperson of the Thalassaemia Society, Mumbai, and Munshi, President of Thalassaemia Society, Pune, further encouraged him to involve the association in conducting the awareness activity.
“The incidence of thalassaemia is high in several pockets of India including the north-east. But there is little awareness about this,” says Munshi. The overall incidence of thalassaemia is approximately 10-12 per cent of the population, while the incidence is higher-around 16 per cent-in communities like Sindhis and Kutchhis Lohanas, she pointed out.
Chances of having a thalassaemic child increase if both parents are carriers. What is important is that thalassaemia major is a preventable disease. But people with thalassaemia major having severe anaemia could be facing threat to life if left untreated.
For Majethia, who is now in the managing committee of Parents Association Thalassemia Unit, Mumbai, said that working for these children is an addiction. “I have been working since 1987 as a senior liaison officer at Sion hospital when the first thalassaemia centre was set up for children. Today, bone marrow transplant is the way out, but it is very expensive,” she says.
These children require regular blood transfusions with periods varying from once in 8 days to once in 30 days depending upon their age. As the children grow older, they require more blood, Majethia pointed out.
It’s a genetic disorder and there is a need for antenatal diagnostic screening so that it can be detected when the child is in the womb. There is a need for early detection and hence, screening tests are important. But for all this, a lot of awareness is required, Majethia stressed.