KARACHI: Around five percent of the population is a carrier of Thalassaemia minor, according to Dr Nazneen Zaidi of Fatimid Foundation.
She said this is preventable by pre-marital screening and by avoiding marriage with a fellow carrier among other precautionary measures. She was speaking at an event organised by the Fatimid Foundation to commemorate the World Thalassaemia Day on Wednesday.
For a person suffering from Thalassaemia, an inherited genetic blood disorder, the body makes abnormal haemoglobin which causes the red blood cells to break down soon after they are formed leaving a person anaemic. Of the two types of Thalassaemia, minor and major, it is the latter that requires regular blood transfusions. Though born normal, children suffering from Thalassaemia major develop anaemia between the age of three and 18 months, which, if not treated, leads to death within the first three years.
According to Fatimid Foundation about 4,000 children are born with Thalassaemia major each year in Pakistan and currently there are 100,000 people suffering from this disorder.
The chief operating officer and secretary of Fatimid Foundation Trust, Rumi Dossal, said that they are trying to get affiliated with the World Thalassaemia Federation to further improve their services. The federation would help them provide the patients a multidimensional treatment encompassing cardiologists, dental help and pathological services.
The treatment for thalassaemia major involves blood transfusion after every two to three weeks. Though most children receiving transfusions live well into their teens, they need more treatment to live longer. The only known cure is a bone marrow transplant, which costs Rs1.6m million.
Fatimid Foundation chairperson, Lt. Gen. (R) Moinuddin Haider, asked the provincial governments to extend help in buying equipments for their centres in other cities. Auqaf and religious affairs minister Sardar Yasin Malik, who was the chief guest, hoped that the Thalassaemia bill sent to the parliament would be passed.
Published in The Express Tribune, May 9th, 2013.