Islamabad - A walk was held on Tuesday to create awareness about thalassaemia major that is a very serious yet preventable disorder.

The walk was organised jointly by Thalassaemia Awareness & Prevention in Pakistan (TAPP) in collaboration with First International Women & Child Health Conference MCH & Paeds Department of Pakistan Institute of Medical Sciences (PIMS). Amongst other dignitaries and doctors it was well attended by thalassaemia affectees and their families.

The thalassaemia carriers in most cases are easily identifiable by simple blood tests. The most practical and feasible option is carrier screening especially extended family screening, screening of the spouse whenever a carrier is found, genetic counselling and prenatal diagnosis done around 12 weeks of pregnancy followed by selective termination of affected pregnancies.

“Choice is yours, a pain of single prick or million pricks.  As nation we are responsible to put these children into thalassaemia major trauma. If we get ourselves tested for thalassaemia gene and avoid marriage between two carriers then thalassaemia associated complications and problems can be avoided absolutely,” said President TAPP Ayesha Abid.

“There is no cure for thalassaemia. Available treatments are not widely available and extremely expensive and fraught with complications. Prevention is the best approach and for prevention creating awareness about the disease within communities is crucial,” said Dr Tabish Hazir, Professor & HOD Paediatrics PIMS.

“The time is arrived that we should offer thalassaemia screening to all young couples who are planning to marry. Cousin marriages are resulting higher incidences of thalassaemia major. The diagnostic test CVS at the end of 3rd month of pregnancy can diagnose the disease and can help us in preventing thalassaemia major,” said Dr Sayeda Batool Mazhar, Professor & HOD Gynaecology PIMS.

Thalassaemia has several types depending on the causative genetic mutation while has mainly three clinical types namely Thalassemia minor (mild anaemia), Thalassemia Intermedia (moderate anaemia) and Thalassemia major (severe anaemia).

Sustained survival of the affected individuals depends on regular blood transfusions on once and at times twice monthly basis; hence it is the biggest burden on our transfusion centres. Thalassemia cannot be caught or passed on to another person.  After receiving multiple blood transfusions, iron overload in the body which can damage their different organs and cause various complications. Infections such as hepatitis B/C and HIV/ AIDS can be transmitted through contaminated blood.  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. Blood, syringes and other medications become their part and parcel of life. Lifelong treatment drags them into depression and other psychological problems.

Pakistan has a carrier rate of around 6 to 8% in general population for thalassaemia minor meaning that about 10 million people of our population are thalassaemia carriers. This is a very alarming situation for us as thalassaemia is increasing day by day due to our ignorance and lack of awareness.