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Not more than five years ago, when my cousin was born with a so-called genetic disorder, the family was in utter aghast and confusion. Educated and employed, we are, little did we know anything about the abnormality and what can be done – both prevention and cure. When medical tests confirmed that it was Thalassemia Major and the illness associated with it, I was a confused 19 year old girl who was helpless but could only wait to see what fate has decided for the newborn.
Google, fast enough to comprehend my anxiety, helped me greatly. It was then that I realized that the cure to her disease was in her body part which the doctor dissected and wrapped off as waste after her birth. Neatly washed baby was handed over to the mother yet the cure of her unknown disease was thrown away.
On the other hand, our elders were still trying to figure out if this genetic crime was committed by the mother or father but happened to understand after doctor’s explanation, that both the parents were carriers of the gene and the baby - an innocent victim. This was declared after Thalassemia tests were conducted on the parents – only at the wrong time after the damage had already happened. All the scientific pieces apart, it took me very less time to understand that my cousin was suffering from a disease just because she was unlucky enough to be born to two highly educated Thalassemia carriers with absolutely no idea of it and her being a second child, who is more prone to inherit the gene.
A prevalent disease in the present society, Thalassemia major, also called Cooley’s Anemia, is basically a genetic disorder. It prevents the body from making healthy Red Blood Cells and Hemoglobin in the blood which in turn results in lack of iron in the body which eventually leads to enlargement of major body parts like heart, spleen and lever. It is, in fact, a serious illness that cannot be cured with medicines but can only be controlled by frequent blood transfusions which can keep the hemoglobin level to normal. The newborns with this disorder show symptoms like pale color, lack of appetite, dullness and comparitively delayed growth.
The only cure to Thalassemia now available is the Bone Marrow Transplantation, which is possible only in case of a few patients with the matching donor available. As prevention is always better than cure, parents undergoing blood tests before planning can be a good option. A positive test result will not stop you from bearing a child. Many pre-natal blood test procedures are available which are done in 11th week of pregnancy to detect if the child is developing the major gene.
Other cure, a successful one is the utilization of Umbilical cord blood which is saved at childbirth and can completely cure more than 72 types of diseases including Thalassemia. This implies the importance of Cord Blood Banking in the present scenario. Many societies have come up with the facility of storing the umbilical cord blood of the child from child birth till the end of life and this cord blood can help in curing many of the genetic disorders that are already there and might come up in the future. Newly married and planning parents need to be aware of genetic disorders and should consult doctors in advance to avoid any unexpected circumstances.
Where as, in my case, watching my sister getting used to this suffering since 5 years made me take a wise decision to get the tests done at the right time when needed. To contribute to the Thalassemia patients who will require blood very frequently, I have chosen to donate blood for every 6 months. This way, I can join hands to save millions out there who are unfortunate enough to be born with a deficiency of the most commonly available fluid in the world (as long as human race is there) - Blood.
Be Educated and Aware and Save a child's life.