Eight to 10,000 children are born with thalassaemia every year, and the number is rising. It’s a genetic disorder, with both parents as carriers and neither actually suffering from the disease. The gene can be identified through a test. There are no vaccines or medication for it, and the patients need blood transfusion every two to three weeks. The only possible cure is bone-marrow transplant, which is extremely expensive.
These are some of the lesser-known facts about the little-known and often-fatal disease of the blood called thalassaemia. Sailen Ghosh, an employee of Central Dairy, has been working on a documentary film on the subject for the past year-and-a-half, on his own steam and through a severe lack of funds. But it’s now complete, and he hopes to take it into the “farthest corners of the world” to educated people on thalassaemia.
The 42-minute film, created under the banner of the Thalassaemia and AIDS Prevention Society, is a look at the reality of the lives of the patients and their struggling families. “Every person and scene in this film is true,” explains Ghosh, the general secretary of the Society. “Not everyone can stomach the image of a two-year-old screaming while a needle is stuck into her for the umpteenth time. But the harsh truth is what we want to show people, so that they sit up and take notice.”
There are interviews with orthopaedics and physicians, and the process of pre-natal diagnosis and a live bone-marrow transplant are captured on film. There are four families, with the patients themselves having undergone over 300 blood transfusions. Four-year-old Payal Mukherjee’s mother speaks of her pain, while 22-year-old Asit Bhandari, a caddy at a city club’s golf course, tells his tale of survival. In Hindi and English, the film is designed to educate, yet reach out on a personal level.
Conceptualised, researched, produced and directed by Ghosh himself, the project was a decade-long dream, ever since his association with the organisation. The target audience is in the villages and districts of the state, “because that is where the cases are increasing at a quicker rate”. And the means is television, through cable operators and Doordarshan.
The film is with the Censor Board at the moment, awaiting clearance. Ghosh is hoping for a mid-July release, at Nandan. “It has to be done in a big way, otherwise, the purpose will be defeated. We have to attract people’s attention first, and then capture it,” the crusader concludes.