Thalassaemia is a hereditary disease of the children who are incapable of forming their own blood and have to live on “borrowed blood” throughout their miserable life. Each child requires a bottle of blood every month to keep him alive. This excessive quantity of blood, when decomposed by the body, results in accumulation of huge quantities of iron, which if not removed, tends to deposit on the vital organs of body and destroy them. Unfortunately this ailment has been spreading unrecognized in Pakistan and no specific efforts to treat and eradicate it were available till recently either in the Govt. or private sector resulting in early death of the patients.

 

Thalassaemia is quietly but rapidly spreading in Pakistan. It is estimated that 5 to 8% of the population is suffering from Thalassaemia Minor (Thalassaemia carrier) who are leading a normal life and are not aware of their hidden malady, and are playing an important role in the spread of the disease to the next generation. This results in adding about 5 to 8 thousand fresh cases of Thalassaemia Major every year to the existing over 100,000 patients in the country. The population of the carriers also increases proportionally. This vicious cycle must be broken before the disease assumes unmanageable proportions.

 

The Pakistan Thalassaemia Welfare Society raised in 1991, was the pioneer in Pakistan to organize an awareness campaign about this unrecognized disease and provide suitable guidelines for its treatment and eradication. The society is working under the patronage of Ministry of Health. The society is a member of the Thalassaemia International Federation located at Cyprus and is internationally recognized.

 

It was realized that organizing an active awareness campaign was essential to familiarize the population about its causes treatment and preventive measures; this resulted in the patient receiving correct treatment and future control of birth of such patients. The work was commenced in a small hired accommodation with just five patients, and due to the awareness campaign more patients were recognized as suffering from this dreadful aliment and attendance at the treatment center rapidly increased.

 

At present the Society has over 1300 registered patients; of which over 500 are attend regularly for blood transfusions and chelation therapy. In addition, the awareness campaign resulted in country wide recognization and now nearly every town has a treatment center to cater for such patients.

 

 

To cater for the ever increasing patients, the centre has now moved to its own premises at Tipu Road, a five storied state of art building opposite Rawalpindi Medial College, where the treatment, prevention, research and rehabilitation facilities are being provided under one roof.

 

The Preventive programme also needs active attention. The need to prevent marriages of the carriers has to be emphasized. Blood tests to detect carriers are now easily available and the youth should utilize it before getting into wedlock. This is only way to stop the rapid spread of the disease in the country and has been utilized for its eradication by several advanced countries. Parents of Thalassaemic patients should get their future pregnancies tested by chorionic villi sampling within the first 12 weeks of pregnancy to determine if the foetus is normal or diseased.

 

Our aim is restrict the spread of the disease and eventually eradicate it from the country.

 

It may be added here that at present the Society is short of some electronic equipment, mobile health unit and essential staff. The present skeletal staff is relatively under paid as compared with the market, resulting in the trained staff slipping away on offer of better terms outside. The laboratory needs special attention as the delicate blood tests require supervision by a Hematologist and trained Technicians. These gaps need to be filled so that the Society continues its humanitarian task.