Seminar held to create awareness about thalassaemia

ISLAMABAD - In order to create awareness among Pakistan Telecommunication Corporation staff and higher management against a deadly but preventable disease, a seminar was organised by Thalassaemia Awareness & Prevention in Pakistan (TAPP) in collaboration with PTCL Headquarters.
Thalassaemia is an inherited blood disorder and happens to be the commonest genetic disease in Pakistan. Every year several thousand kids are born with thalassaemia major and many fall prey to the complications of this deadly disease. Survival of the affected individuals depends on regular blood transfusions on once and at times twice 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 and timely screening. Thalassaemia is an inherited blood disorder. The genes received from one's parents before birth determine whether a person will have thalassaemia. Thalassaemia cannot be caught or passed on to another person. The clinical severity of thalassaemia varies tremendously depending on the exact nature of the genes that a person inherits. Thalassaemia occurs when one or more of the genes fail to produce certain proteins leading to a shortage of one of more of the 4 subunits of haemoglobin molecule. When it affects alpha subunits, the condition is called alpha thalassaemia and when affecting beta subunits, it is called beta thalassaemia.
Thalassaemia has several types depending on the causative genetic mutation while 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 per cent in general population for thalassaemia minor meaning that about 10 million people of our population are thalassaemia carriers, while in index families the prevalence is as high as 30 per cent. 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. "Prevention is better than cure, instead of spending million and billions on treatment, we should create awareness and prevent this dreaded disease, get tested, before it tests you", said Ms. Ayesha Abid, President TAPP.
Thalassaemia can be prevented by effective screening of carriers. If a thalassaemia carrier marries another thalassaemia carrier, then in every pregnancy there is a 25 per cent chance of birth of a thalassaemia major affected child. So ideally, two thalassaemia carriers should avoid marrying each other. But in case marriage between two carriers does occur, then the lady should go for pre-natal 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.
"While the transfused blood gives life to the patients, it also leads to iron deposition in different organs of their body damaging their liver, heart, endocrine glands and other organs. The carrier state in most cases is easily identifiable permitting control of Thalassemias, by a program of carrier screening especially extended screening of index families. Screening the partner whenever a carrier is found, counselling and prenatal diagnosis done around 12 weeks of pregnancy followed by selective termination of the affected pregnancies is the most practical option", said Dr. Faiza Fahim, Consultant Haematologist.
Iron removal from the body is called chelation. Searching for blood donors and arrangement of iron chelating medicines is a big challenge for Thalassemics and their parents. These unfortunate families are glued to the hospitals rather than enjoying the childhood of their kids. 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.
TAPP presented few suggestions to PTCL management. In order to create thalassaemia awareness among general public by using latest technology, PTCL should contribute their efforts by printing public service message on their Telephone bills, broadcasting public service messages on Smart TV, telephone inquiries and help lines so our future generations could be saved from this deadly disease.
In the end Shahzad Safdar, Executive Vice President PTCL concluded the session by ensuring full support for thalassaemia awareness through PTCL platform.

on epaper page 14
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