“I want to live but my mother and father do not have enough blood to save my life; they secured me for more than 5 year but now I am fed up of fighting this disease,” said Kashan Haider,12, a thalassaemia patient in Ganga Ram Hospital. Haiders’ father, Akram Hussain, a shop keeper in Kahna, takes his son for treatment twice a month. He has three sons and three daughters and all expect Haider are normal.
Hussain said his son was living a normal life and he was about to go to school but they (Haider’s parents) noticed various changes in Haider, such as body pain especially headache and weakness. They contacted local doctors who could not provide better treatment to Haider and after six month, they visited Lahore General Hospital where after complete checkup, they found that their son was thalassaemic. The doctors referred Haider to Ganga Ram Hospital for better treatment.
World Thalassaemia Day was observed through out the country on Saturday. Various seminars were organized to aware people about thalassaemia. The Thalassaemia Society of Pakistan arranged a program for thalassaemia affected children at the Childrens’ Library Complex where gifts were distributed amongst thalassaemic children. Mayo Hospital Medical Superintendent Dr Zahid Pervaiz said there were around one million thalassaemic patients in Pakistan. He said the numbers were rising due to an increase in the average age of the Pakistanis.
However, he said, the country was not ready to tackle this problem as there were no treatment services for the people suffering from this disease. He said though exact number of thalassaemic patients in the country was unknown, conservative estimates suggest that around 60,000 Pakistanis suffer from this inherited form of anaemia caused by faulty synthesis of haemoglobin whereas around 10 million people were thalassaemia carriers.
“If both parents are thalassaemia carriers, the risk of their children being thalassaemic was 25 percent. In other words, when a child is born with the disease both the parents pass on the defective gene to the child,” said Zahid. The Thalassaemia Society of Pakistan Secretary General Dr Yasmeen Rashid said every year, 5,000 to 6,000 thalassaemic babies were born in the country. She said most common variety of thalassaemia was the beta-thalassemia, normally known as thalassaemia major, which led to defective beta-chain synthesis of the haemoglobin molecule resulting in production or reduced production of the normal haemoglobin.
The end result, she said, is lifelong anemia that required repeated blood transfusion costing around Rs100, 000 a year. She said Thalassaemia was no less than a major public health problem and as a matter of fact, this was the most common inherited single-gene defect in the world. “The inheritance is complex. Simply, thalassaemia belongs to a diverse group of hemolytic anemia with many clinical variants, resulting from different gene defects,” she said.
