Tracking thalassemia

The six students of Wilson College had picked up the disorder for their final-year contemporary issues project. Nehal Tiwari,one of them,says,“We wanted to target youngsters who would probably be thinking of starting a family. We contacted five-six call centres that usually have a young workforce and sought permission to meet workers. We were denied permission.” Adds Manish Usapkar,“We were shoved off. One man in Thane said we should not teach wrong stuff to youngsters. Some people think that thalassemia is a sexually-transmitted disease.”

Royce Noronha says,“We had prepared a streetplay on the issue,but when we enacted it at Marine Drive not even one passerby stopped to see that.” Adds Nisha Thomas,“Also,the word thalassemia itself is so new,that to just make the person aware about such a thing is challenging.”

But then,the campaign took off. A group member,Leron D’Souza,created a video and put it on YouTube and Facebook,which received over 800 hits. They did a two-day drive too,wherein they spoke to people at Bandra Bandstand,Marine Drive,Girgaon Chowpatty and the like. “At Bandstand,we went behind barricades and enclosures where couples sit and talked to them,” says Royce. “In fact,some people actually thought we are talking about AIDS and HIV… We would move around with flexes on our necks,saying things such as “Are you feeling fit and fine”. Or hang a mirror around our necks and say this person could be a thalassemia patient.”

Nehal says they realised they needed to attract people’s attention. Manish adds,“We would be asked questions such as is thalassemia a planet or some country. People do not have any idea what it is. Once there was a doctor couple at Marine Drive who did not know about the disorder; they thought they did but had no clue about it.”

Aparna Nair says they used to join people jogging at Marine Drive in the morning just to talk to them. “We orgnanised innovate games like dart at a suburban college where nobody would even stop and listen to us. People would come and play and then we could talk about thalassemia.”

Manish says they did not initially believe in the concept. The ‘moment’ came when the group took out some thalassemia-affected children to MacDonalds for a treat. “I was told that there will be affected people aged 12 to 21,but I could not find any 21-year-old. These people have stunted growth and perhaps they do not look their age. Yet I was stunned how normal they look,” says Nisha.

“Once I saw a patient who was having blood transfusion,which is the only way they can stay alive; and here he was eating Kurkure and watching TV. Instead of feeling pity,I felt I should give them a well-deserving life,” adds Aparna.

For the group,thalassemia is now a life-long cause. “We will keep coming back to this issue through the NGO ‘Think Foundation’ that fights for this cause,says Manish.