Thalassaemia a silent threat

Shetu Akhter and Aminul Islam were filled with joy when their daughter was born in 2019. But that joy was short-lived as Ahona, their daughter, was diagnosed with thalassaemia, an inherited blood disorder, just within 19 months of her birth.

Thus began their days of struggle. The couple had to travel from their home in Netrakona to Dhaka once a month to give blood to their child.

However, before their daughter was diagnosed, both Shetu, 30, and Aminul, 35, never heard about the disease. After conducting blood tests later on, they found out they were both carriers of thalassaemia.

"We never heard of thalassaemia, let alone take caution for it," said the mother.

Like Shetu and Aminul, a large number of people in Bangladesh are not aware of the disease, which leads to a condition called anaemia, characterised by weakness, fatigue, feeling faint, shortness of breath and stunted growth.

By performing a quick test before you tie the knot, thalassaemia can be avoided. But, the majority of Bangladeshis do not consider it, which leads to trouble later on.

— Omor Faruk Managing Director of Bangladesh Thalassemia Foundation

According to the Bangladesh Thalassemia Foundation, thalassaemia carriers make up 7 percent of the general population, and 7,000 new-borns are born with the disease each year in Bangladesh. There is no government data on children with thalassaemia and its carriers.

Experts say thalassaemia is a lifelong disease which requires expensive treatment. Patients need regular blood transfusion and medications.

Although early detection is key, the majority have no idea that a simple blood test prior to marriage can identify the carriers. A test can prevent future generations from contracting thalassaemia and other genetic and blood abnormalities, they said.

Mujahida Rahman, assistant professor at the department of haematology of Bangabandhu Sheikh Mujib Medical University, said, "A child with thalassaemia is the result of a lack of knowledge and awareness."

"To avert thalassaemia from the root rather than having to terminate or abort the child afterwards, there should be a strict rule requiring haemoglobin electrophoresis testing before marriage, which a large part of our population is unbeknownst to," she said.

"Not many know about thalassaemia... People in rural areas in particular are completely ignorant of it. We need an awareness programme on it, which is also extremely scarce," Mujahida said.

Bangladesh Thalassemia Foundation promotes pre-marital screening and boosting knowledge of the disease, seeking to address the dearth of treatment options and awareness in Bangladesh.

Omor Faruk, managing director of the foundation, said more children are born with thalassaemia because the haemoglobin electrophoresis test is not used or even available in many rural areas.

"By performing a quick test before you tie the knot, thalassaemia can be avoided. But, the majority of Bangladeshis do not consider it, which leads to trouble later on," he said.

"This genetic blood condition can be curbed by campaigns, media promotion, and outdoor activities, ensuring a healthy future generation," he added.