The weeklong activities to create awareness among masses for prevention and treatment of Thalassaemia disease started on Wednesday in twin cities, Rawalpindi and Islamabad as each year more than 6,000 children are born with severe form of the disease (thalassemia major).
Principal Riphah International University, Maj Gen (r) Masood Anwar addressing a press conference held here at the University Campus said that the Thalassemia is a genetic blood disease and amongst the most common inherited single gene disorder in the world. Scientists and public health officials predict that Thalassemia will become a worldwide issue in the next decades, he added.
On this occasion, President Thalassaemia Welfare Society, Gen (r) Faheem Ahmed Khan and Prof Dr Tahir were also present. Maj Gen (r) Masood Anwar said that this genetic blood disease is characterized by absent or decreased production of normal hemoglobin, resulting in anemia of varying degree. Thalassemias have a distribution concomitant with areas were malaria was common. He said in Pakistan five percent people (about 8 million) carry a gene for thalassemia. Each year more than 6000 children are born with severe form of the disease while in remote and rural areas due to non-availability of diagnostic facilities a large number of these children die before diagnosis. More than 20,000 children are registered with different NGOs and government teaching hospitals, he informed.
In individual with thalaassemia minor haemoglobin may be a little lower than other people of their age and sex, but this produces no symptoms. They were born with this condition and will have it all of their lifetime. Thalassemia minor does not change into thalassemia major, he said adding, problem arises when two individuals who have thalassemia minor marry. In this situation there is a 25 percent chance that any pregnancy can result in a child with Thalassemia major.
Thalassemia Major is the most severe form of the disease and occurs when a person inherits two thalassemia genes, one from each parent. Treatment for thalassemia major involves blood transfusions that must be given every four to six weeks for whole of life. Every effort should be made to maintain their haemoglobin above 10 grams per dl. Blood must be appropriately screened and cross matched, he said.
He informed that at the moment, bone marrow transplantation is the only curative option for thalassemia. This, though, is available to only a small proportion of patients.
With transfusions and with the continuous use of desferal, the life expectancy of the patients with Thalassemia major has been greatly improved with many patients reaching their thirties and even beyond. They are completing their education, have their jobs, have married and have children, he added.
He informed that Thalassemia Federation of Pakistan was established in 2003 by NGOs and individuals involved in care of thousands of children suffering from Thalassemia major. The Thalassaemia week is being organized by Thalassaemia Awareness and Protection in Pakistan (TAPP), Thalassaemia Federation of Pakistan, Jameela Sultana Foundation, Thalassaemia Welfare Society and some educational institutions of twin cities of Islamabad and Rawalpindi.
