Why is India the world’s epicenter for thalassemia?

May 8, New Delhi On World Thalassemia Day on Wednesday, specialists here said that some of the main reasons India has the greatest number of thalassemia major patients worldwide are lack of general knowledge, genetic counseling, and traditional belief systems.

Every year on May 8, we mark World Thalassemia Day to bring attention to the illness. ‘Empowering Lives, Embracing Progress: Equitable and Accessible Thalassaemia Treatment for All’ is this year’s theme.

India is home to one in eight thalassemia patients worldwide. Approximately 10,000–20,000 new cases of thalassemia major are born each year.

Around 1-1.5 lakh children in India are plagued with thalassemia major, making it the country with the highest number of affected children worldwide. India is known as the capital of thalassemia due to a complicated web of interrelated causes. Its incidence is influenced by consanguineous marriages, genetic susceptibility, and ignorance. Population growth, restricted access to screening, and a lack of knowledge are the main causes of the increase in India, according to Sunil Bhat, Director and Clinical Lead for Pediatric Hematology, Oncology, and BMT at Narayana Health Network Hospitals, who spoke with IANS.

A serious hereditary blood condition called thalassemia major is handed down from parents to their offspring. The condition arises from the body’s insufficient production of hemoglobin, a crucial component of red blood cells, necessitating biweekly blood transfusions.

It is especially common in societies where cousin marriages are common as well as in certain ethnic and geographic groupings.

“In India, a greater frequency of the gene raises the incidence of Thalassemia in several populations, including Bengalis, Muslims, Bhanushali, Kutchi, Marwari, Maratha, Sindhis, and Punjabis. According to Vijay Ramanan, Senior Consultant Clinical Haematologist, Bone Marrow & Stem Cell Transplant, Ruby Hall Clinic, Pune, the prevalence of Thalassemia Minor in this group ranges from 8–14%, IANS was informed.

There are more people in India who are impacted by genetic abnormalities due to the country’s big population and high birth rate.

“Insufficient preventative actions result from a general population that is not well-informed about genetic counseling and Thalassemia. There is variation in the use of prenatal and premarital Thalassemia screening around the nation, according to Vijay.

“More and more children with thalassemia are being married to other children with the disease, which is a result of ignorance and the belief that astrology is more significant than science. A kid with thalassemia major has a 25% probability of being born into such a marriage, the speaker said.

Although prenatal diagnostics is available in the nation to avoid the birth of such children, the doctor bemoaned the fact that “such couples do not avail themselves of it due to religious beliefs or ignorance.”

Furthermore, there might be differences in the accessibility and availability of medical treatments between the nation’s rural and metropolitan areas, including chelation therapy and blood transfusions.

Crucially, the physician also brought up the dearth of information.

There are between 4 and 6 lakh children in India who have thalassemia major, according to estimates. However, the illnesses for which transfusions are required are often not included in the statistics. Due to a lack of a register, thalassemia major patients have not been distributed throughout states, according to Vijay.

The experts pointed out that broad screening, premarital counseling, and comprehensive information on genetic risks are crucial to addressing the thalassemia burden in India.

Furthermore, encouraging relationships between medical professionals and local communities and advocating for a national policy that supports voluntary genetic testing are two more ways to improve preventative efforts. In the end, proactive steps like prompt detection and treatment are crucial to reducing the effects of thalassemia in India, according to Sunil.

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