Seven-year-old Khushi is a thalassaemic major and has to go to a hospital for blood transfusion every three to four weeks. The young one has no idea why she needs transfusion. She got the disorder from her parents, who did not get their thalassaemia status checked before tying the knot, or even during pregnancy.
Dayanand Medical College and Hospital (DMCH) organised a thalassaemic carrier test at Punjab Agricultural University (PAU) recently. Out of the total 203 who came for the check up, seven were identified as thalassaemic carriers - posing a threat of the disorder in their children if they marry another thalassaemic carrier.
“Thalassaemia is a genetic or inherited condition affecting the blood, and it is of different types,” said Dr Shruti Kakkar, assistant professor of pediatrics at DMCH, and incharge of the hospital’s Thalassaemic Cell.
“Genetic changes cause thalassaemia. Genes tell our body how to make an important chemical called Hemoglobin, which carries oxygen in the blood, and gives blood its red colour. Those suffering from the disorder are not able to produce these cells which create blood. Therefore, the body needs blood from outside,” said Dr Shruti.
She added that outside blood has excessive iron in it, and to control this, medicines need to be provided to thalassaemics. It is a lifelong process which the child has to undergo, she further said.
Rajesh Kapoor, president of Zindagi Live Foundation, which works with thalassaemic children, said, “Parents need to understand that their one test can save their child from suffering from a lifelong problem.”
Zindagi Live has adopted 94 thalassaemic children so far. These children are provided blood and other facilities by the foundation. Organisation secretary Yogesh Gupta said spreading awareness about blood donation in the society was the need of the hour.
Punjab has most Thalassaemia carriers
Dr Praveen Sobti, who is appointed as the coordinator for Thalassaemia International Federation for Punjab, said, “In India, 3.5% population is a thalassaemia carrier, while in Punjab, the percentage varies from 5 to 17% . The area near the Pakistan border has the maximum percentage of thalassaemia carriers.”
Till now, more than 1,000 children are reported to have been undergoing treatment for thalassaemia in Punjab, Sobti said, adding that a survey is being conducted so that maximum benefit can be provided to these kids.
Sobti further added, “Wherever I go, I give a message to youngsters to undergo a thalassaemia carrier test before marriage as it is simple and can save their own from suffering.”
The treatment for thalassaemia depends on the type and severity of the disease. General treatments include blood transfusions, bone-marrow transplant, medication and supplements, and now, stem cell technology. The treatment may cost around Rs. 1 lakh for a year, said Kakkar.