Awareness key to prevent thalassemia

Sisters Zaheratul Islam Athoi and Zahina Islam Zyma remain sick for most of the year as they are thalassemia patients.

Thalassemia is a genetic blood disorder, passed from parents to children.

"We were diagnosed with thalassemia during our early childhood. Almost every month we have to have regular blood transfusions as we suffer from anaemia," said Athoi.

To prevent thalassemia, all couples must get a blood test before getting married or planning for a child.

— Prof Mohammad Shahidullah Child specialist

The sisters shared their experience at a seminar held in the auditorium of Bangladesh Shishu Hospital and Institute (BSHI) yesterday.

Mahfuzur Rahman, father of Tawhid Hossain, 11, who is a thalassemia patient, said, "The treatment for this disease is so expensive, I cannot afford it."

To raise awareness, World Thalassemia Day is observed by Thalassemia International Federation (TIF) on May 8 every year. 

People suffering from thalassaemia produce little to no haemoglobin, resulting in anaemia which causes tiredness, shortness of breath, and exposes patients to a variety of ailments, said Prof Md Selimuzzaman, Secretary General of Shishu Hospital Thalassemia Center.

"There is no concrete data on how many thalassemia patients exist in the country. However, an estimated 10–12 percent of the population are carriers of a gene that causes thalassemia, said Prof Belayet Hossain, head of the haematology department at BSHI.

When two carriers get married, their children may acquire this chronic disease. Approximately 15,000 children are born with the illness in Bangladesh every year, he added.

There is treatment for thalassemia. Patients need one to two bags of blood per month for transfusion. The only cure is through a bone marrow transfusion, which is very expensive.

Child specialist and BSHI Management Board President Prof Mohammad Shahidullah 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 blood test before getting married or planning for a child.

The best way to prevent thalassemia is to avoid marriage between two carriers and cousins, he added.

There is no alternative to public awareness about thalassemia, said Prof Waqar Ahmed Khan, president of Bangladesh Shishu Hospital Thalassemia Center.

Campaigns are needed to raise awareness about the disease. There were many thalassemia patients in Iran and Cyprus. However, the number fell after they enforced mass screening programmes. "We should do the same," said Jahangir Alam, director of BSHI.