Rifat Zafreen :
Six years Tuny – so cute and angelic – full of life. She is the apple of eyes of all. But these days she looks timid and gloomy. She gets tired and feeble so easily. Very often she remains feverish. Her parents take her to doctor and after some tests and diagnosis – she is detected as a thalassaemic patient!
Thalassaemia is an inherited disease affecting the blood. Although it is the most common congenital disorder in the world including Bangladesh, people know very few about the disease.
The abnormal gene that is responsible for thalassaemia is passed on to the patients from their parents or grandparents. It only occurs when both father and mother carry the abnormal gene and transmit to their child. There is 25% chance of a child suffering from thalassaemia in such case.
If any of the two partners is a carrier of abnormal gene and other one is normal, there is no chance of occurring thalassaemia. Thus, there is scope of prevention of this disease by having awareness of the people and testing for the disease before marriage.
The carrier status of thalassaemia trait is about 10% in Bangladesh, which is, approximately 16 million carriers are there here, but presumably less than 1% of the population is aware of this disorder in the country.
In thalassaemia, there is defect in the production of red pigment of blood called hemoglobin that carries oxygen to our tissue. This leads to a condition called anemia characterized by weakness, fatigue, feeling faint, shortness of breath and growth failure.
In order to correct anemia, regular blood transfusion is needed to keep hemoglobin up to normal level. But there is risk in transfusion too.
It results in excessive collection of iron in the body and which is toxic causing damage to the heart, liver, pancreas and pituitary gland leading to organ failure. This iron needs to be removed by drugs which are expensive. The treatment is lifelong. Bone marrow transplantation is the only cure, but it is very costly and has complications as well which is most of the cases beyond the reach of the common people.
Thus, prevention is always the best strategy. Awareness, screening of carriers and prenatal diagnosis of couples are the important steps in preventing the births of thalassaemia.
Cyprus is the example we can follow as a country in this case which proves, awareness can completely eradicate the disease.
In early 70s, Cyprus was with the highest rate of carriers of thalassaemia. Then it started awareness building and screening programme with having facilities for prenatal diagnosis. And the births of thalassaemic children drastically fell.
At present several countries like Italy, Greece, UK, France, Iran, Thailand, Singapore and Hong Kong have started comprehensive national prevention programme which include education, screening of carriers and counseling as well as providing with information on prenatal diagnosis.
Our government should make better facilities to treat the patients and ultimately prevent the disease. About seven to eight thousand children are born with thalassaemia every year in Bangladesh and suffer till their early death, wherever we could prevent those births and the agony of those children and their families.
All government laboratories should have facilities to diagnose the disease and detect traits. Awareness of the disease and screening of the carriers along with prenatal diagnosis of fetus should be started with the option of abortion of the affected child.
Our media can play a very vital role in this case. Both the print and electronic media can create and increase awareness in preventing thalassaemia. It is in our reach that we can stop the thalassaemic births and so the pain.
We should try with all our heart to have a Bangladesh where there will be no thalassaemia and no thalassaemic patient like Tuny. All the families will be full with light and happiness with their healthy and happy children – we can hope, try and get determined. —PID – Feature
