August 19, 2020

India has largest number of kids with Thalassemia Major’

10,000-15,000 children having this blood disorder born every year in the country, says health
India has the largest number of children with Thalassemia Major who need regular blood
transfusion and 10,000-15,000 children having the blood disorder are born every year in the
country, Union Health Minister Harsh Vardhan said on Tuesday.
Lauding the work of the Indian Red Cross Society at the inauguration of a Thalassemia
Screening and Counselling Centre at its National Headquarters Blood Bank here, the minister
said such initiatives “will enable us in educating the common people on prevention of this
disease”.
He said there are around 270 million Thalassemia patients in the world.
“India has the largest number of children with Thalassemia Major in the world, about 1 to 1.5
lakh, and about 10,000-15,000 children having Thalassemia Major are born every year.
“The only cure available for such children is bone marrow transplantation (BMT). However,
BMT is difficult and not affordable by the parents of all these children. Therefore, the mainstay
of treatment is repeated blood transfusions, followed by regular iron chelation therapy to
remove the excessive iron overload, consequent to the multiple blood transfusions,” he was
quoted as saying in a statement.
Vardhan said this new initiative of IRCS will provide a golden opportunity to administer
adequate therapy to those affected enabling them lead a better life and preventing the birth of
children affected with hemoglobinopathies, through carrier screening, genetic counselling and
prenatal diagnosis.
“This programme will aid in prevention of birth of children affected with hemoglobinopathies,
through well-planned screening programmes, information dissemination and awareness
generation activities and help avert the imminent threat of this genetic disorder turning into a
major health problem.
“With these progressive initiatives, we shall soon be able to achieve the New India being
envisioned by the prime minister by 2022,” he said.
Haemoglobinopathies such as Thalassemia and sickle cell disease are inherited disorders of red
blood cells and are preventable. These illnesses are chronic, life impairing and in some cases,
life threatening and impose a heavy emotional and financial burden on families.
In India, Thalassemia Major and the severe form of Thalassemia Intermedia (TI) constitute the
major burden of disease. Both are commonly managed by regular lifelong blood transfusions
and regular iron chelation, the statement said.
These Thalassemia syndromes are caused by inheritance of abnormal (beta) Thalassemia genes
from both parents or abnormal beta-Thalassemia gene from one parent and abnormal variant
haemoglobin gene (HbE, HbD) from the other parent, it said.

https://www.tribuneindia.com/news/health/india-has-largest-number-of-kids-withthalassemia-
major-127968

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