Have you seen kids play? In their homes, in their neighbor’s house or on the roads? Isn’t it so normal seeing them enjoy their lives, busy with friends, toys and happiness of it all? For a child suffering from thalassemia it’s not normal, the idea of playing from sunrise to noon is alien. Why? Because they spend their entire days caged up in thalassemia centers for blood transfusions. It’s normal for them to spend their days waiting for blood transfusions, and if they God forbid don’t get blood, their life is utterly halted in agony because they don’t have the privileges of a working heart that allows them to be mobile.
All of this suffering is caused by the neglect of the parents from getting tested before marriage. Thalassemia is an inherited blood disorder in which the ability to produce hemoglobin and healthy red blood cells is impaired. Its symptoms are very similar to anemia ranging from mild to severe even leading to death in extreme cases. Hemoglobin is a complex protein that is present in your red blood cells that allow for the transport of oxygen throughout your body. So your body no longer produces an adequate amount of red blood cells, resulting in anemia as well. It is due to gene mutations and is an inherited disease, so is transferred from parent to child. It has two types; minor and major .People who are thalassemic minors (only one mutated gene) have no effect on their lives whatsoever and it causes no threat to normalcy, although a thalassemia minor is a carrier of the disease. There are 9.8 million carriers of thalassemia only in Pakistan .In a major thalassemic person two mutated genes), complications include: delayed growth, bone problems causing facial changes, liver and gall bladder problems ,enlarged spleen, enlarged kidneys, diabetes, heart problems and is almost always fatal.
One of the most common misconceptions is thalassemia isn’t preventable when it is. It can be prevented by screening and genetic counseling. Genetic counseling is when a group of people have a long history of thalassemia or belong to certain ethnic groups can get genetic counseling before marriages. Screening or testing before marriage for both parties can result in prevention of spreading of this disease to the next generation. One of the most well-known awareness Volunteers is known as JIHAD FOR ZERO THALASSEMIA, pair with students from different schools and is a student led institutions that allow people to help thalassemic patients and raise awareness for this cause. A simple conversation about thalassemia to the next person can help save from a life of misery. Thalassemia isn’t a taboo topic it’s an important disease that people don’t consider or give importance to enough. It is real, painful and woeful.
Over the years many foundations have opened up to provide quick blood to the patients and help make their lives a little better (eg.Fatmid foundation). These have made the process of finding suitable blood, disinfection, transfer, recovery much much easier. Foundations like these allow for patients and families of the patients a little less stressed and make this journey a little easier .So if you’re reading this, raise awareness to your friends ,family ,cousins ,coworkers etc. It is important to note thalassemia in a child in life altering and can cause agonies beyond imagination. A simple test saves lives.
The writer can be reached at [email protected]