A tired and anemic thirteen-year-old Rafi was seated on a bench of a ground. Destiny has barred Rafi to lead a life like other normal children as he is often being faced with horrific experiences of Thalassemia, a blood disorder which requires transfusions every other week to keep him healthy and alive. It did not make him feel happy witnessing many children playing on the ground.
Living a delightful childhood is a rarity in the life of teenager Rafi who told that he was born with thalassemia, that creates a lot of complications, especially transfusion-related iron overload which requires a daily drug treatment. Sometimes it can be scary knowing that excess iron will damage patient’s heart and liver. Rafi was looking bored as he was not able to run or play like other children.
He is one of the thousands of examples of Thalassemia disease, which is the most common congenital disorder in Bangladesh.
The Thalassemia disease disorder poses a significant health burden in Bangladesh and it is estimated that nearly 7000 Thalassemic children are born every year in the country. Among the Thalassemia patients, few among them are optimally managed.
Thalassemia Center of Dhaka Shishu Hospital President Dr A Wakar Khan said Thalassemia not only affects children, it also creates psychological and social problems in the family. To prevent life-long agony, all couples must get a genetic test before planning a child, he added.
Dr Khan said Thalassemia 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 Thalassemia major. Avoiding marriage between two Thalassemia carriers may prevent the disease in children, he added.
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 generated to different body parts. Such body parts gradually become immobile and create many more problems in the body, he continued.
The physical disorder results in large numbers of red blood cells being destroyed and eventually leads to anemia, he said, adding the breakdown of blood cell occurs both in bone marrow and spleen.
Gradually, the liver and spleen becomes enlarged. 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.
The doctor said as an inherited disease, Thalassemia can occur in children of parents who are Thalassemia positive. It can occur in other members of the family who carry the same genes.
However, the children who are only Thalassemia positive but not affected can lead a normal life, the doctor opined.
Dr Khan said the best way to prevent the disease in babies is avoiding marriage between two carriers. Blood tests before marriage can help detecting the carriers. Blood tests are mandatory before marriage in many countries nowadays.
Former Health Minister Muhammad Nasim said the Bangladesh government has taken note of the magnitude of problem of Thalassemia and is creating awareness of the disease, which is a very commendable step.
He said all the public hospitals in the country would diagnose the blood of the patients with Thalassemia free of cost. He said the disease is spreading because of ignorance of people. Therefore, creating awareness is the need of the hour to get rid of this deadly but preventable disease, he added.
By staying committed to long-term treatment, people with Thalassemia can enjoy a full life. Specialized care across the lifespan can help people who have Thalassemia live as healthy as possible.
