An organisation that works to raise awareness about thalassemia and conducts free tests among the youth to detect carriers of the disease completed a decade this year.
Aarjava Welfare Society was registered in 2013 by a group of like-minded people who wanted to stand by the less privileged.
Besides other activities, the society has also worked over the years to raise awareness about thalassemia.
“We have conducted tests among the youth in some villages in Lataguri in north Bengal. Recently, we conducted tests in Jhargram’s Jamboni and Lalgarh areas,” said Chiranjib Goswami, secretary of Aarjava and a founder member.
“There is still a lot of inhibition among people to get tested. More awareness generation is required so that more people come forward and get tested,” said Goswami.
Debmalya Bhattacharya, a haemato-oncologist and also a member of Aarjava,
said the tests help identify whether someone is a carrier of the disease.
“Thalassemia is passed on to a child from parents. If one of the parents is a carrier, the child will not inherit the disease. But if both the parents are carriers, then there is a possibility that the child will inherit the disease,” said Bhattacharya.
He said Aarjava conducts screening among the youth so that they are aware of their status and plan their marriage and family with that knowledge.
Earlier this month, members of Aarjava held a news conference to urge more social organisations and clubs to come forward to raise awareness about the disease and the screening tests.
Actor Sabyasachi Chakraborty, a member of Aarjava, was present at the news conference.
Goswami said free thalassemia tests were available in nearly all government
medical colleges and hospitals but people did not show keenness to get tested, which is why they started to conduct the tests by visiting places.
Aarjava is now planning to take it up as a project and organise such tests at regular intervals.
The website of the Centers for Disease Control and Prevention in the US says: “Thalassemia is an inherited (i.e., passed from parents to children through genes) blood disorder caused when the body doesn’t make enough of a protein called haemoglobin, an important part of red blood cells”.
“People with moderate and severe forms of thalassemia usually find out about their condition in childhood, since they have symptoms of severe anaemia early in life. People with less severe forms of thalassemia may only find out because they are having symptoms of anaemia, or maybe because a doctor finds anaemia on a routine blood test or a test done for another reason,” the website mentioned.