In India, as many as 12,000 babies are born with the fatal disease every year. 

New Delhi: Every year the eighth day of May is observed as the Thalassemia Day across the world.

The purpose of having an entire day dedicated to the fatal disease is due to the need to spread knowledge and awareness among the masses, to motivate the youth to get tested before they transmit the disease to their offspring and also to get treated before it’s too late and most importantly, to encourage the government to come up with health care facilities in order to help the affected.

This year, the theme worldwide is “Thalassaemia past, present and future: Documenting progress and patients’ needs worldwide”. The special day is celebrated by organising events and campaigns in schools, colleges and other institutes where the involvement of the patients is highly encouraged.

Symptoms

Thalassemia is a disorder in the blood in which the body produces abnormally low Red Blood Cells (RBCs) which are the protein carriers. The disease causes a number of complications such as bone deformities, heart palpitations, jaundice and delayed puberty, among others. As the disease is inherited, it cannot be cured but can be managed or treated through blood transfusion and bone-marrow cell transplantation if diagnosed at the right time. Proper diagnosis before child birth is required to prevent it from getting passed down to the off-springs.

Thalassemia can be fatal depending on its severity. It usually exists in three forms, thalassemia trait or asymptomatic carrier stage where the patient does not show any symptom and remains undiagnosed if not tested, thalassemia intermedia which is less severe than thalassemia major, hence they require less blood transfusions and thalassemia major which is the severest and results in causing ineffective production of RBCs and hypochromic anaemia. The carriers have to undergo blood transfusion after every 15-30 days.

The picture here in India looks grim. As many as 12,000 infants are born here every year with a severe stage of the disease

However, the prevalence of Thalassemia is not uniform in the country. People suffering from the disease are found more within communities such as Sindhi, Punjabi, Lohana, Kutchi, Mahar and Gowda. The disease is less prevalent in the southern states.