Thalassaemia Prevention needs greater awareness and attention
Thalassaemia Prevention – Subhojit Roy, a veteran activist and volunteer for Thalassaemia Rotarian, said of the condition of Thalassaemia in India, “To eradicate Thalassaemia, we urgently need to raise awareness about preventive health screenings; otherwise, this genetic disorder will be passed down to their children due to ignorance. We desperately hope that carrier detection tests will become mandatory.”
Every month, around 1,00,000 Thalassaemia majors and 40 million carriers in India receive blood transfusions.
These results are quite concerning, and we urgently require a comprehensive preventative and control programme. The condition can be avoided with the help of medical doctors, particularly Gynaecologists, as well as every pair being more alert and screening for Thalassaemia in every pregnant woman.
There is no known cure for Thalassaemia other than bone marrow transplantation (BMT), which most patients in India cannot afford and for which they do not have suitable matches with siblings or others. BMT is only safe for children under the age of ten. After that, it poses a serious risk.
Though government medical facilities provide free transfusion and medicines, the infrastructure is hardly adequate and requires far greater impact in rural areas, private organizations, non-profits, service organizations, and parent-guardian bodies have been working hard over the past few decades to raise awareness and build resources for those already reeling under the pressure of continued treatment for those affected by Thalassaemia.
As a result, the role of social organizations and volunteers as catalysts for such action becomes increasingly important, and I believe that this is a chance for these groups to effectively fill the gap. The other natural approach would be a total eradication awareness campaign. We believe that one day, just like it did with Polio in 2014, India would have a law and a process to eliminate Thalassaemia with the help of all stakeholders in the health sector,” Subhojit Roy stated on World Thalassaemia Day, which is commemorated every year on May 8.
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