Rahul Dey and his wife Promita Rani are bankers by profession. They had a happy conjugal life along with two children - Prasanta, 7, and Jhorna 5.
But, for the last couple of days, Prasanta appeared to be not interested in playing with his sister or other children at the ground floor of their building. He looked tired and bored.
One day, Prasanta felt sick. Then, his parents took him to a medicine doctor. After several diagnoses, the doctor told them that their child is infected with Thalassaemia. So, he is not able to run like other children.
Thalassaemia is the most common congenital disorder in Bangladesh as nearly 7000 children are estimated to be born with thalassaemia every year in the country, doctors said. Expressing concern over the growing number of Thalassaemia patients in the country, they called for undergoing blood test before marriage to prevent the disease.
On May 10, the World Thalassaemia Day was observed in the country as elsewhere in the globe to raise awareness about the disease. This year’s theme was “Empowering Lives, Embracing Progress: Equitable and Accessible Thalassaemia Treatment for All”.
The World Thalassemia Day is observed every year in the month of May aiming to raise awareness about this disease among the people throughout the world.
Thalassaemia Center of Dhaka Shishu Hospital President Dr A Wakar Khan said Thalassaemia not only affects children, it also creates psychological and social problems in the family.
To prevent life-long agony, all couples must go through a genetic test before planning to have a child, he added.
Bangladesh Thalassaemia Foundation (BTF) Adviser Aminul Islam said they have taken many initiatives to prevent the disease in the country.
He underscored the need for raising awareness among the people to prevent it, saying that media can play an important role in this regard as well.
Citing World Health Organization (WHO), Aminul said some 7 percent people of total population are carriers of Thalassaemia in Bangladesh.
“We have no exact data on how many patients with the disease are there in Bangladesh. But according to International Thalassaemia Federation, around 60,000 people are carrying Thalassaemia in Bangladesh. The disease turns rich men into paupers. A patient needs one or two bags blood in every month to survive,” he added.
He also said they will create a volunteers’ group with 10,000 blood donors soon.
Blood disease expert Professor Dr Monzur Morshed said there is a shortage of skilled manpower and medical equipment to serve patients with this disease.
Dr A Wakar Khan said, “Thalassaemia is a preventable disease. It occurs only when both the parents carry the Thalassaemia gene. In such families, the probability of having a Thalassaemia-affected baby in each pregnancy is 25 percent. However, if any partner of the parents is healthy, children will not be affected at all.”
He said Thalassaemia is an inherited blood deficiency disorder that stops children’s growth and makes them weak.
If the child inherits the gene defect from both parents, it develops Thalassaemia major, he said.
Avoiding marriage between two Thalassaemia carriers may prevent the disease in children, he added.
He went on saying that children with the disorder suffer from lack of oxygen as the body fails to produce adequate amounts of haemoglobin.
“As a result the child becomes weak and loses stamina. The broken down red cells produce a lot of iron in different body parts. Such body parts gradually become immobile and create many more problems in the body. Gradually, the liver and spleen becomes enlarged,” he continued.
The medication to remove extra iron is also very expensive, Dr Khan said, adding it is said that the disease can be completely cured by transplanting bone marrow.
However, bone marrow transplantation is very expensive as well, he continued.
The doctor also opined that the children who are only Thalassaemia positive but is not affected can lead a normal life.
