World Thalassemia Day is celebrated every year on 8 May to raise awareness about this disease. This year's theme is 'Empowering Lives, Embracing Progress, Equitable and Accessible Thalassemia Treatment for All'.
Every eighth thalassemia patient in the world lives in India. And every year about 10,000-20,000 new cases of thalassemia major are born.
“India has the largest number of children suffering from thalassemia in the world and approximately 1-1.5 lakh children are affected by it.India's status as the Thalassemia Capital arises from a complex interplay of factors. Genetic predisposition, endogamy and lack of awareness are responsible for this." The increase in prevalence in India can be attributed to population growth, limited access to T screening and lack of awareness," says Sunil Bhat, director and clinical lead pediatric hematology, oncology. and BMT, Narayana Health Network Hospitals, told IANS.
Thalassemia major is a serious hereditary blood disorder, passed from parents to children. The disorder occurs when the body is unable to make enough amounts of a protein called hemoglobin.
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It is particularly prevalent in populations where the incidence of marriage between cousins is high and also in certain ethnic and geographic groups."In India, some communities like Sindhi, Punjabi, Bhanushali, Kutchi Marwari, Maratha, Muslim and Bengali have higher prevalence of the gene which increases the incidence of thalassemia. The incidence of thalassemia mino in this community varies from 8-14. per cent,” Vijay Ramanan, senior consultant clinical hematologist, bone marrow and stem cell transplant, Ruby Hall Clinic Pune, told IANS.
The large population and high birth rate in India also contribute to a large number of individuals being affected by genetic disorders.
Vijay said, “Preventive measures are inadequate due to lack of widespread awareness and education about thalassemia and genetic counseling among the general public."Prenatal and pre-marital screening for thalassemia is not done uniformly across the country."
He said, "Ignorance and willingness to believe that astrology is more important than science has contributed to the increase in the incidence of thalassemia minors marrying another thalassemia minor. Such marriages have a 25 percent chance of having a thalassemia dominant child." Is."
The doctor lamented that prenatal diagnosis exists in the country to prevent the birth of such children, but "such couples do not avail it due to religious beliefs or ignorance".
Furthermore, availability and access to medical services, including blood transfusion and chelation therapy, may be unequal across urban and rural areas of the country.Importantly, the doctor also pointed out the lack of data.
"Rough estimates are that about 4 lakh to 6 lakh children suffering from thalassemia major exist in India. However, diseases requiring transfusion are not generally collected in the data. The distribution of thalassemia major patients across the state is based on data from the registry. It has not been done due to shortage,” Vijay said.Experts say widespread education on genetic risks, premarital counseling and comprehensive screening is necessary to address the burden of thalassemia in India.
"Furthermore, promoting the government's voluntary genetic testing national policy and fostering partnerships between doctors and communities can enhance prevention efforts. Ultimately, proactive measures, such as early diagnosis and timely management, can reduce the impact of thalassemia in India. are the key to reducing.Sunil said.
Every eighth thalassemia patient in the world lives in India. And every year about 10,000-20,000 new cases of thalassemia major are born.
“India has the largest number of children suffering from thalassemia in the world and approximately 1-1.5 lakh children are affected by it.India's status as the Thalassemia Capital arises from a complex interplay of factors. Genetic predisposition, endogamy and lack of awareness are responsible for this." The increase in prevalence in India can be attributed to population growth, limited access to T screening and lack of awareness," says Sunil Bhat, director and clinical lead pediatric hematology, oncology. and BMT, Narayana Health Network Hospitals, told IANS.
Thalassemia major is a serious hereditary blood disorder, passed from parents to children. The disorder occurs when the body is unable to make enough amounts of a protein called hemoglobin.
,
It is particularly prevalent in populations where the incidence of marriage between cousins is high and also in certain ethnic and geographic groups."In India, some communities like Sindhi, Punjabi, Bhanushali, Kutchi Marwari, Maratha, Muslim and Bengali have higher prevalence of the gene which increases the incidence of thalassemia. The incidence of thalassemia mino in this community varies from 8-14. per cent,” Vijay Ramanan, senior consultant clinical hematologist, bone marrow and stem cell transplant, Ruby Hall Clinic Pune, told IANS.
The large population and high birth rate in India also contribute to a large number of individuals being affected by genetic disorders.
Vijay said, “Preventive measures are inadequate due to lack of widespread awareness and education about thalassemia and genetic counseling among the general public."Prenatal and pre-marital screening for thalassemia is not done uniformly across the country."
He said, "Ignorance and willingness to believe that astrology is more important than science has contributed to the increase in the incidence of thalassemia minors marrying another thalassemia minor. Such marriages have a 25 percent chance of having a thalassemia dominant child." Is."
The doctor lamented that prenatal diagnosis exists in the country to prevent the birth of such children, but "such couples do not avail it due to religious beliefs or ignorance".
Furthermore, availability and access to medical services, including blood transfusion and chelation therapy, may be unequal across urban and rural areas of the country.Importantly, the doctor also pointed out the lack of data.
"Rough estimates are that about 4 lakh to 6 lakh children suffering from thalassemia major exist in India. However, diseases requiring transfusion are not generally collected in the data. The distribution of thalassemia major patients across the state is based on data from the registry. It has not been done due to shortage,” Vijay said.Experts say widespread education on genetic risks, premarital counseling and comprehensive screening is necessary to address the burden of thalassemia in India.
"Furthermore, promoting the government's voluntary genetic testing national policy and fostering partnerships between doctors and communities can enhance prevention efforts. Ultimately, proactive measures, such as early diagnosis and timely management, can reduce the impact of thalassemia in India. are the key to reducing.Sunil said.
