Lack of awareness behind increasing thalassaemia cases

ISLAMABAD - More than 10 million people are thalassaemia minors and more than 6,000 children are born with thalassaemia major disease in Pakistan, while leading cause of rise in thalassaemia cases in Pakistan is lack of awareness and ignorance.
The students of University of Lahore, Islamabad Campus, was informed this in a lecture given by Ayesha Abid, president of Thalassaemia Awareness & Prevention in Pakistan (TAPP). 
"Timely diagnosis of beta thalassaemia can save us from enormous problems and challenges, only lack of awareness and ignorance is the leading cause of thalassaemia rise in Pakistan," she said.
Thalassaemia is an autosomal genetic blood disorder. It can only be passed on from parents to their children. Normally people carrying beta thalassaemia minor gene do not know that they are having this gene until they get themselves tested for HB electrophoresis (specialised blood test for thalassaemia).
Thalassaemia has mainly three types; thalassaemia minor (mild anaemia), thalassaemia major (severe anaemia), thalassaemia intermedia (moderate to severe anaemia). Thalassaemia minor is not a disease; however thalassaemia major is a serious life threatening disease.
Regular blood transfusions, medicines for lowering iron in the body are difficult to manage and expensive. The cost of supportive treatment for one child is Rs 300,000 per year. It is a great cost where more than 50 per cent of the population is living below poverty line.
"We don't have a culture of voluntary blood donations. Treatment is very costly whereas prevention is very economical. Parents have to arrange blood through personal contacts, gradually and slowly all the relatives start hiding from them because they fear that the parents are after their blood.
 It adds insult to injury. There are some organisations supporting thalassaemia but they are not able to cope with the demand."
"Get tested, before it tests you", "Carrying beta thalassaemia minor is not a disease or illness and does not affect his/her health and normal routine life, however our ignorance can make it problem and disaster for our generations. If somebody diagnosed with beta thalassaemia minor he/she should not feel embarrassed or ashamed about it," said Miss Abid.

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