DHAKA, Aug 25, 2020(BSS)- It came as a bolt from the blue for a happy couple when their seven-year-old child was diagnosed with Thalassemia, a blood disorder which requires transfusions at a regular interval to remain healthy and alive.
Banker by profession, Promotosh Barua and his wife Debika Rani Barua were leading a pleasant living along with their two children- Prashun Barua, 7, and Jhorna Barua, 5.
As ill luck would have it Thalassemia disorder nested in Prashun who was found not showing interest as earlier to play with his sister and other children as well. Moreover, the tender boy looked tired, grimed and bored all the time, causing concern to his parents. At one stage, Prashun fell sick seriously, forcing his parents to take him to a medicine specialist. After necessary medical examinations, Prashun was diagnosed with Thalassemia. Doctors attributed the disease to his inability to runto and fro and play like other children.
Thalassaemia is the most common congenital disorder in Bangladesh that bears the health burden of having nearly 7000 children with Thalassemia disease every year.
On May 8, The World Thalassemia Day was observed in the country as elsewhere in the globe to raise awareness about the disease. This year’s theme was “Begin thalassemia prevention from young age, blood test before marriage will make the future generation safe.”
The World Thalassemia Day is also observed every year on May 8 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 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.
Expressing concern over the growing number of Thalassemia patients in the country, experts called for testing blood before marriage to prevent the disease.
Bangladesh Thalassemia Foundation (BTF) adviser and Public Administration Ministry Joint Secretary Dr Md Aminul Islam, who is on post-retirement leave, said they have taken many initiatives marking the ‘Mujib Borsho’ to prevent the disease in the country.
He underscored the need for raising awareness among people to prevent it, saying media can play an important role in this regard.
Citing World Health Organization (WHO), Aminul said some 7 percent people of total population are carriers of Thalassemia in Bangladesh. Around 7,000 children are born with the disease every year, he added.
“We have no exact data on how many Thalassemia patients are there in Bangladesh. But according to International Thalassemia Federation, around 60,000 people are carrying Thalassemia 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, “Thalassemia is a preventable disease. It occurs only when both the parents carry the Thalassemia gene. In such families, the probability of having a Thalassemia-affected baby in each pregnancy is 25 percent. However, if either partner is healthy, children will not be affected at all.”
He 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.
He went on saying that children with the disorder suffer from lack of oxygen as the body fails to produce adequate amount 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.
Gradually, the liver and spleen become enlarged. The medication to remove extra iron is also very expensive, Dr Khan said, addingit is said that the disease can be completely cured by transplanting bone marrow. However, bone marrow transplantation is very expensive.
But the children who are only Thalassemia positive but not affected can lead a normal life, the doctor opined.
In a message, issued marking the Day, Prime Minister Sheikh Hasina said that the government has started providing Taka 50,000 as assistance to every Thalassemia patient as well as cancer, kidney and liver cirrhosis patients for their treatment.
By staying committed to long-term treatment, people with Thalassemia can enjoy a full life. Thalassemia is a treatable disorder that can be well-managed.