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What Is Thalassemia And How It Affects Children And Families
What Is Thalassemia And How It Affects Children And Families
Thalassemia is a blood disorder that affects the body's ability to produce haemoglobin, the component of red blood cells responsible for carrying oxygen. When haemoglobin does not function properly, the body struggles to receive adequate oxygen. This results in anaemia, causing children to feel tired, weak, or unwell even after minimal physical effort.
Dr Chandrakant Agarwal, President, Thalassemia and Sickle Cell Society shares all you need to know:
As a genetic condition, thalassemia is inherited from parents and is not contagious. In India, approximately 45 million individuals carry the thalassemia gene, and over 15,000 babies are born each year with thalassemia major. Children affected by thalassemia major require blood transfusions every 15–20 days throughout their lifetime.
In most cases, parents of a child with thalassemia major learn about the condition for the first time only after their child is diagnosed. This situation must change. Awareness about thalassemia needs to spread across the country, reaching every primary health centre. Every doctor should recommend thalassemia screening specifically the HbA2 test during the first trimester of pregnancy as a preventive measure. This simple, low-cost test can prevent a lifetime dependence on blood transfusions and help avoid associated complications. However, if a child is born with thalassemia major, it is not the end of the world.
Until recently, managing thalassemia was an arduous task, involving the constant challenge of securing regular blood supplies and controlling complications arising from repeated transfusions. In the past, children with thalassemia were often viewed as “sub-normal" and socially isolated. Today, that myth has been firmly shattered.
Children with thalassemia are no longer ignored or stigmatised. A person with thalassemia major can now lead a normal life, just like anyone else. With regular blood transfusions and appropriate chelation therapy, many individuals with thalassemia major are successfully pursuing careers in medicine, engineering, civil services, business, and teaching.
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Comprehensive treatment, combined with care and support often provided at no cost to families has transformed outcomes. Regular group interactions, celebrations, outings, and picnics help build bonds and ensure these children feel wanted, loved, and cared for. The idea is simple: they do not need sympathy; they need understanding and space. They are in no way lesser in intelligence, ability, or potential they simply require a little extra care.
Although thalassemia is a lifelong condition, early diagnosis, timely treatment, and strong social support allow children with thalassemia to live healthy, fulfilling lives. Awareness, early screening, and responsible medical intervention can significantly reduce the impact of the disorder on families and society at large. A future where no child suffers unnecessarily from thalassemia is possible, if fear is replaced with awareness and action.
Source: News18
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