Patient education key to cope with Thalassaemia

Thalassaemia is the name of a group of genetic, inherited disorders of the blood (more specifically of the haemoglobin molecule inside the red blood cells). The comprehensive support to the Thalassaemia patients in Bangladesh is still below the line that pushes them forward to the lifelong miseries.

Recently George Constantinou, the Secretary of Thalassaemia International Federation paid a special visit to Bangladesh to observe the condition of Thalassaemia patients. During his short visit, he shared his views with Star Health.

George underscored on turning a different approach of the physicians to the Thalassaemia patients. He said, “The attitude of the doctors are very important. A patients must be compliant with his/her doctor to cooperate treating the condition.”

George, who himself is a Thalassaemia patient, expressed that he saw many doctors who don’t pay attention to the patients in that expected manner. The patients may not be aware of their condition. That is how they are struggling. Thalassaemia patients need to visit a doctor many times in his/her lifetime. So treating the patients holistically as a human being is very crucial. Otherwise, handling the disease is not possible. Due to the lack of this holistic approach, most sick people die of the disease.

George shared his own experience with his doctor at his childhood. Professor Bernadette Modell asked George at his first visit what he would like to be when he grew up. George said, “It was the first time someone looked at me; it was my doctor — not my mother, not my father … and first time I thought about myself that I can also grow up as a normal individual, I may have vision as well …”

George stressed on patient education the most. Unless the patients understand their condition, the purpose of investigations, progress of the disease, they may not cooperate with the doctor. Patients must be proactive, compliant, willing and capable to cope with the disease.

George urged the professional associations working on Thalassaemia in Bangladesh to help the Government running a dedicated and integrated approach to handle the disease. Unlike many other countries in the world, professional bodies in Bangladesh are dealing mostly with the treatment and different services like transfusion, drug administration and so on. George opined that they need to contribute something to patient education as well.

Also the Government needs to focus on some form of programmes focusing on the disease.

Dr Tareq Salahuddin
Source: The Daily Star, February 20, 2010