All Round View(Peshawar): Thalassemia is a genetic blood disorder characterized by partial or no production of alpha or beta globin chains, which can be fatal if proper treatment, is not received. The more severe form is beta-thalassemia major also known as Thalassemia Major, which warrants regular blood transfusions at an early age. If left untreated, the result can be early death. For those children who do survive, this condition has serious implications for their health related quality of life, and they have to be treated at the Thalassemia Treatment Center, which sometimes takes half a day. They also have to undergo iron chelating therapy to remove excess iron from their blood.
Beta thalassemia is an increasingly serious public health problem throughout the Mediterranean region, the Middle East, the Indian subcontinent, and Southeast Asia. Beta thalassemia has been a major public health problem in Pakistan for many years. The off-springs of two Thalassemia Minor individuals (Carriers) have 25% probability of becoming Thalassemia major.
Every year, 5000 to 6000 new thalassemia major cases are born. The carries make up to 6% of the whole population in Pakistan, and the cost to raise a thalassemia child is around 6 lac per annum. According the different surveys and researches, the gene pool where the deadly disease exists comprises of mostly the poor who are unable to pay for their food even. The only possible solutions are
- Frequent blood transfusions. Patients of Thalassemia Major require frequent blood transfusions, possibly every few weeks. Over time, blood transfusions cause a buildup of iron in your blood, which can damage their heart, liver and other organs.
- Chelation therapy. This is a treatment to remove excess iron from their blood. Iron can build up as a result of regular transfusions. Some people with thalassemia who don’t have regular transfusions can also develop excess iron. Removing the excess iron is vital for their health. To help rid their body of the extra iron, they need to take an oral medication, such as deferasirox (Exjade, Jadenu) or deferiprone (Ferriprox). Another drug, deferoxamine (Desferal), is given by needle.
- Stem cell transplant. Also called a bone marrow transplant, a stem cell transplant might be an option in some cases. For children with severe thalassemia, it can eliminate the need for lifelong blood transfusions and drugs to control iron overload however it is very costly and the chances to survive and the success of the operation are negligible. This procedure involves receiving infusions of stem cells from a compatible donor, usually a sibling.
- Awareness. The cheapest yet the most effective solution is to spread awareness about the disease and about conduction of Hb Electrophoresis Test before marriage. Many organizations including JZT (Jihad for Zero Thalassemia), Frontier Foundation, and Fatimid Foundation are working on the mission to eradicate thalassemia from Pakistan by spreading awareness, supplying blood to already present cases of thalassemia major and arranging free medicines for those who cannot afford them.
As responsible citizens, it is our duty to help those in need. By donating blood, medicine and by spreading awareness, we can make Pakistan, a thalassemia free state.