We all know how vast a platform The Saree Saga is. It has an extremely wide reach and this is exactly why I felt that my experiences with Thalassemia can be talked about here so that I can do my bit to create awareness amongst the readers. The readers, in turn, can always spread the word and a ripple effect will be created. In the process, if I can touch at least one life, I would feel blessed.
Thalassemia is a genetic disorder that parents pass on to their children unknowingly. Neither myself nor my husband was aware that we are carriers until our firstborn was diagnosed with it. We had no serious manifestations. So we were blissfully oblivious of the disaster.
Our world came crashing down when my boy was 2 years old. He was passing yellowish urine with a mild fever. We took him to his paeditrician who immediately suggested some tests. His haemoglobin report was shocking. It was only 7.5. Further tests confirmed that he had Thalassemia. It was then that our tests were done. I turned out e-trait and my husband has Thalassemia minor, which means that we had no serious problems. But our child got seriously affected.
We rushed him to Chennai. We were told there that this is a condition where blood breaks down real fast. This in turn causes anaemia. So, to compensate for that my boy shall need a blood transfusion. Throughout his life. In this condition every patient is unique. Some need a blood transfusion every 4 months, some every 6 months, some every 7 days, some every 15 days, some once in a month like my boy.
Just as in diabetes, sugar gets accumulated in the body, my boy accumulates iron or ferritin in his body. That needs to be removed once it reaches the 1000 mark. My boy had to start that at the age of 4. The medicine is dissolved in water and taken empty stomach in the morning. This ferritin needs to be controlled. At any cost.
My boy is 12 now. His transfusion continues every month. He is doing well. We remain in touch with his haematologist in Chennai. They too are happy with his progress. We feel blessed.
My earnest request to all my readers is to conduct an e-disease test on anyone they know who is newly married. The problem with our society is that we are not open to such tests. But this is important. Some are silent carriers like myself and my husband. They lead a normal life outwardly. But both minorly affected parents can easily pass it on to their child, unknowingly.
Let us make more and more people aware of this. It can really make a difference.
As I write this blog, I am with my boy at the hospital for his transfusion. He is busy with his Roald Dahl. It is a matter of 7 to 8 hours. Then we can go home.
Until next month. And life goes on!
By Kakoli Das
Assistant Lecturer of English at St. Peter’s College, Shillong, Kakoli is an avid reader and a blogger by passion. She can be contacted at kakoli.mamoni@gmail.com
Facebook Comments