World Thalassemia Day: Why couples need to match their blood status before horoscopes

Every year, 10,000 children are born with Thalassemia Major

Every year about 10,000 children are born in the country with Thalassemia Major. “India has become the thalassemia capital of the world , unfortunately,” says Dr Munshi who is also president of Thalassemia Society, Pune Chapter.

Thalassemia Major is a genetic disorder wherein a child is born with the condition because both parents are Thalassemia carriers. Parents are usually asymptomatic as carriers and there is a 25 per cent chance of passing it on to their children. “It affects all organs of the body. It starts with the bone marrow being unable to produce adequate haemoglobin. The liver and spleen are also under pressure and overworked. Due to repeated blood transfusions and iron overload, the thyroid, pancreas and the pituitary gland malfunction and require specific medication to treat each of them. Sometimes thalassemics experience facial bone deformities. A transfusion, while life-saving, has to be watched as excessive iron-buildup can be life-threatening, affecting major organs,” says Dr Munshi. This year the theme on World Thalassemia Day is “Be Aware. Share. Care: Strengthening Education to bridge the Thalassemia care gap.” Despite its prevalence, there is a lack of awareness about thalassemia and the treatment options.

Treating a child with a Thalassemia Major costs almost Rs 2 lakh per year

Thalassemia Major children need blood transfusions from almost six months for life, says Dr Munshi. In addition, they need the use of filters. Repeated blood transfusions lead to an increase in iron levels in the body for which they need to take medicines, she adds. The cost of maintaining a child with Thalassemia Major is almost Rs 2 lakh per year. So, by the age of 40 years, the family would have spent approximately Rs 80 lakh. This is unaffordable for most families. The cost of screening, which includes CBC + HB electrophoresis — a special test to detect if a person is a Thalassemia Carrier — is Rs 1,000-1,400. Special discounts are offered. “Still, these medicines are very expensive and eventually, it is a medical, psychological, emotional, social and financial burden on the family,” Dr Munshi says.

Importance of preventive screening and awareness

The rate of picking up a Thalassemia trait is 3-4 per cent. This means for every 100 people screened, there would be at least three to four people detected with the trait. “Hence preventive screening is an important measure,” Dr Munshi says, adding that they have been testing pregnant women in rural areas and screening college students and corporates. “It is extremely important to spread awareness about prevention strategies. Testing people for Thalassemia carrier status in society is very important to prevent the birth of a single Thalassemic child,” she adds. So far, they have tested over 5,000 people. “Our target is to test at least 25,000-30,000 people every year,” she points out. Dr Munshi adds that their dream was to ensure “Zero Thalassemia Births” by 2025 in Pune, “Zero Thalassemia Births “ by 2030 in Maharashtra, and Thalassemia mukt Bharat “ by 2040. It is extremely important to spread awareness about prevention strategies.

Living with thalassemia

According to Dr Shweta Lunkad, consultant haematologist with Ruby Hall Clinic, a person living with thalassemia has a life-long struggle. “They have to run from pillar to post for their monthly blood transfusions, filters, investigations, consultations, and medicines. This struggle is shared equally by their family and friends. Our thalassemics have only one motto, ‘If there are limits, they are self-imposed.’ I am proud to say that our warriors are living up to the sixth decade, having a successful personal and professional life,” Dr Lunkad adds.