Islamabad: Thalassaemia is an inherited blood disorder and happens to be the commonest genetic disease in Pakistan. Every year several thousand kids are born with it and many fall a prey to the complications of this deadly disease. Survival of the affected individuals depends on regular blood transfusions on monthly basis hence it is the biggest burden on our transfusion services. Despite all this, very little is known about it to the general public and the fact that it can be prevented by proper screening.
These views were expressed by experts of seminar on Thalassaemia awareness and prevention organised by Thalassaemia Awareness & Prevention in Pakistan TAPP at Air University.
They said that Thalassaemia has several types. Of these Beta Thalassaemia is the more prevalent one in Pakistan. Genetic mutations cause Beta Thalassaemia. It has mainly three clinical types namely Thalassaemia minor mild anaemia, Thalassaemia Intermedia moderate anaemia and Thalassaemia major severe anaemia. Pakistan has a carrier rate of around 6 to 8% for Thalassaemia Minor meaning that about 10 million people of our population are Thalassaemia carriers. Every year around 7,000 to 8,000 children are born in Pakistan with Thalassaemia Major. This is a very alarming situation for us as Thalassaemia is increasing day by day due to our ignorance and lack of awareness, they added.
Ayesha Abid President TAPP has said that Ignorance is not always a blessing. Some time due to this very ignorance and lack of awareness, we face enormous problems and challenges so it is better to be safe than sorry”, she added.
She said that Thalassaemia can be prevented by effective premarital blood screening. If a Thalassaemia carrier marries another Thalassaemia carrier, then in every pregnancy there is a 25% chance of birth of a Thalassaemia Major affected child. So ideally, two Thalassaemia carriers should avoid marrying each other, she added. But In case marriage between two carriers does occur, then the lady should go for prenatal screening for Thalassaemia Major within the first three months of conception so as to know if the foetus is affected or not. Religious guidelines and Fatwa are available to guide us even in this situation and parents can discuss it with their doctor, she added.
Dr. Aftab Ahmad Khan Consultant Haematologist said that Thalassaemia Major is a very serious illness in which the patient cannot live without regular blood transfusions and costly medications. While the transfused blood gives them life, it also leads to iron deposition in different organs of their body damaging their liver, heart, endocrine glands and other organs, he added.
He said that iron removal from the body is called chelation. Searching for blood donors and arrangement of iron chelating medicines is a big challenge for Thalassaemic and their parents. These unfortunate families are glued to the hospitals rather than enjoying the childhood of their kids, he added.
He further said that bone marrow transplantation is a cure for severe Thalassaemia but the procedure itself is quite costly and has its own associated complications. Many of the affected families cannot afford it. Considering the enormous challenges faced by these poor families, it is best to prevent this disease, infact nowhere else can the dictum, “Prevention is better than cure” is more applicable than the case of Thalassaemia, he added.
On the occasion Thalassaemia documentary “Aagahi” and song Aass ka diya jalana hai” were also played and grabbed the attention of the audience. Students, faculty members of Air University and Thalassaemia major patients were also attended the seminar.