In a seminar about the latest developments on thalassemia, Health Minister Dr. Yasmin Rashid announced that the law requiring thalassemia tests before marriage will soon take effect in Punjab. Pakistan drafted this law in 2016 with plans to curb thalassemia in the country but it was still on hold due to unknown reasons. According to reports, around 6000 children on average are born annually in Pakistan with this disease.
Why Thalassemia Tests Are Required Before Marriage?
Thalassemia is an inherited blood disorder that causes the human body to produce less hemoglobin than required. Hemoglobin is a protein present in red blood cells which enables them to carry oxygen.
This genetic disorder can cause anemia, leaving the host fatigued most of the time. Other wide-ranging effects on the human body include bone deformation, Hemochromatosis (iron overload), and even heart diseases. In severe cases, one might require regular blood transfusions. However, with mild thalassemia, treatment might not be needed. Patients can cope with fatigue by taking a healthy diet and regular exercise. The severity of thalassemia depends on the mutations in the genes and their connection with each other.
If two carriers of thalassemia marry each other then there’s a 25% chance of them passing on the genes to their offspring. The average life expectancy of the child is reportedly 12 – 16 years in Pakistan. To prevent the spread of mutant genes, Pakistan made thalassemia tests mandatory before marriage. According to reports, the law states that hosts would be fined 100,000 PKR for marrying each other.
Raising Awareness on Thalassemia
Health Minister also announced that Pakistan will soon set up a research institute on genetic diseases. The government has directed all medical universities to start research on thalassemia. Pre-marriage thalassemia tests were also arranged at the seminar for 7000 people.
Dr. Rashid also informed the public that The University of Leeds (UK) and Punjab Thalassemia Prevention Institute have jointly prepared a handbook on the disease to raise awareness about thalassemia in Pakistan.
What is the Treatment for Thalassemia?
Out of the 220 million population of Pakistan, over 10 million people reportedly carry this disease. Carriers require monthly blood transfusion and chelation therapy to extract overloaded iron from their bodies. However, this is not the permanent treatment. The only way to permanently cure thalassemia is by allogenic transplant (stem cell or bone marrow). Stem cells are inside the bone marrow and create different types of blood cells including red blood cells.
Stem cell or bone marrow transplant is a complex procedure with the risk of serious problems. In some cases, the donated allogenic can register the host’s body as “foreign” and can attack its organs and cells. It is called graft versus host disease (GvHD) which can also cause severe abdominal swelling, shedding of the mucous membrane, chronic diarrhea, nausea, and abdominal pain.
Thalassemia tests can be performed from many institutes in Pakistan in like the Fatmid Foundation, Sundas Foundation, Pakistan Institute of Medicine Sciences, and The Aga Khan University Hospital.