Call for awareness about thalassaemia

Karachi
Group Executive Director and spokesman Help International Welfare Trust agreed that cousin marriages in Pakistan was one of the factors t causing thalassaemia in Pakistan. He was responding to a question by The News at a crowded news conference.
Earlier Media Director, Help International Welfare Trust Syed Hasnain Rizvi said about 100,000 children in Pakistan were suffering from this deadly disease. He said the not-for-profit trust was treating 30 patients of thalassaemia, free of cost, and organizing the “biggest blood donation camp” at the Expo Centre on March 29 to create awareness about thalassaemia.
Senior Vice Chairman of the Trust Rauf Tabana regretted that that a disaster management system was lacking in Pakistan and whenever there was an eventuality media personnel rush towards the place where disaster has taken place and TV channels appeal for blood donation.
Rizvi said as many as 28 organizations were working to cope with thalassaemia in Pakistan and Fatimid Foundation, Hussaini Blood Bank, Indus hospital and several other organizations were helping out to make the Blood Donation Camp at Expo Centre a success.
Thalassaemia is the most common, inherited, single-gene disorder in the world. Early comprehensive treatment and improved technology have changed thalassaemia from a fatal pediatric disease to one with which patients survive throughout adulthood and can enjoy productive lives. Advances in treatment have resulted in improved quality of life and the potential for a cure. However, many patients and families never receive the information needed to make educated decisions about their treatment, and many ethnic groups are unaware of their genetic risk of thalassaemia and do not receive genetic counseling or prenatal diagnosis. Thousands of patients receive medical care outside of specialized thalassaemia centers.
These patients and their providers need information concerning recommendations for comprehensive screening tests; access to new research protocols and treatment, including transfusion therapy, new chelation therapy, stem-cell transplantation, and hormone replacement; and risk of heart disease, osteoporosis, and hepatitis.
Rizvi said more than 5,000 blood bags would be collected for thalassaemia patients at the Expo Centre event.
He said not only around 100,000 people were suffering from thalassaemia in Pakistan but more worrisome thing was that about 10 million people were carriers of this deadly disease in the country and unaware about this fact. He said 70 per cent of blood collection in Pakistan was used on treatment of this disease. He pointed out that marriages on the basis of caste, ‘baradari’ and inter-family marriages were producing 5,000 to 6,000 babies suffering from thalassaemia every year.
He said laws were made in Pakistan but never implemented. Elaborating he said though the government of Pakistan has passed a law that the bride and groom has to have a test to ascertain if they were carriers of thalassaemia but a strategy to implement the law in letter and spirit was lacking. The federal and provincial government was always lukewarm to implement the law, he added.
He said lack of awareness among the masses was one of the reasons for the spread of thalassaemia in the country. He said about 90 per cent of people in the country were ignorant about thalassaemia in the country.
Citing the examples of Iran and Italy, he said through collective efforts these countries have totally eliminated the deadly disease. “We too can eliminate thalassaemia though joint efforts,” he said.
He said Help International Welfare Trust would raise awareness amongst the people to voluntarity donate blood after every three to four months and dispel the impression that donating blood makes one weak. At the Expo Centre on March 29, he said specialists from different arena would give informed information to people. He said students of medical and other universities would participate in seminars held at the occasion and it would be the endeavour of Help International Welfare Trust to involve the government as well.