Thalassemia activist from West Bengal cycles to Patna with a message

Roy says the harassment and trauma associated with periodical blood transfusions can be avoided if parents decided to test for Thalassemia before bearing a child

A labourer turned Thalassemia activist from West Bengal, Shyama Prasad Dutt Roy pedalled a distance of nearly 800 kilometres from Alipurduar in West Bengal on his bicycle to reach Patna in Bihar on Saturday, completing a leg of his nationwide campaign to create awareness about the disease as he meets Thalassemia patients and their families.

Roy says he wants to tell parents of potential brides and grooms that they must understand the importance of conducting tests to ensure would be couples are not Thalassemia minor (HT Phtoto)

Thalassemia is a hereditary blood disorder, which results in lower than normal amounts of oxygen carrying protein (haemoglobin) in blood and some of its patients have to often go through blood transfusions to survive. People who are carriers of a thalassemia gene show no symptoms and might not know they’re carriers. If both parents are carriers, they can pass the disease to their kids.

Roy says he wants to tell parents of potential brides and grooms that they must understand the importance of conducting tests to ensure the would be couple is not Thalassemia minor.

There are nearly 4,000 Thalassemia patients in Bihar. Recently, the state government started a day care centre at the Patna Medical College and Hospital (PMCH) for consultation, blood transfusion and treatment for Thalassemia patients.

Roy says the harassment and trauma associated with periodical blood transfusions can be avoided if parents decided to test for Thalassemia before bearing a child.

“It’s a hereditary disease and the only way to stop it is to stop marriages of persons with Thalassemia minor symptoms,” he said.

Roy says he first learnt about Thalassemia during his numerous visits to donate blood when told that the camps were mainly for the benefit of Thalassemia patients.

“I was told that they would be dependent upon such blood donations lifelong. It was shocking. But far more frustrating was the fact that the patients were the victims of ignorance of their parents. I realised that people need to be told to stop it “ he said.

The activist said he then decided on a nationwide bicycle tour to spread awareness on the need to test for Thalassemia before marriage.

“I have been travelling since November 18, and during this journey, I realised how ignorant people are about this disease and its reasons. I meet the organisations working for Thalassemia patients and ask them to arrange meetings with them to help them understand the disease and its impact,” he said.

Mukesh Hissarya, who runs a nationwide network of blood donors and has been working for Thalassemia patients in the state, said testing for Thalassemia during pregnancy should also be encouraged. “ I appeal to doctors to also recommend this test for pregnant women,” he said.