As you know, all the body functions, from the simple breathing to the complex process of reproduction, depend upon blood for their continuance. Have you ever wondered what would happen if your body stopped producing adequate amount of blood. What if the red cells in your blood start dying at tripple their normal rate? Sounds like a nightmare. Does it not? Unfortunately, for almost 240 million people around the world, this nightmare is a thing of their daily life. Every year in India alone, almost 70,000 people suffer with this disease which is called as 'Beta Thalassemia' or 'Thalassemia Major.' I am just one of them.
My name is jyoti Arora.I was born on 8 of May 1977 and three months later I was dignosed with Thalassemia Major, a disorder in which body can not produce adequate blood to replace the Red Blood Cells which in this condition die at triple their normal rate. It is a genetic disorder which a child inherits from his parents.
Genes come in pairs. Every person has a pair of genes in which one gene is inherited from mother's side and the other from the father's side. Now if a person has one normal and one mutated gene bearing thalassemia trait, he would be said to have Thalassemia minor. Such persons live normal lives but if mated with other person who too is a thalassemia minor or a thalassemia carrier, their offspring has 50% chance of being a carrier or thalassemia minor, 25% of being absolutely normal and 25% chance of getting the mutated gene of both the parents and thus acquiring Thalassemia Major. I am among these last 25% people.
People with Beta Thalassemia require regular blood transfusion for their life. These blood transfusion occasionaly lead to iron overload in the body which causes damage to all the vital organs and endocrine glands leading to metabolical abnormalities, and stunted growth. Thalassemia is incurable except by bone marrow transplant which unfortunately is very expensive and highly risky. Even the proper management of this disease which includes blood transfusions and iron chelation (to reduce the iron overload) is highly expensive. In India there are only about 8% thalassemics who can afford the proper care that a thalassemic needs.
I am one of such lucky few. But it was not always like that. there was a time when only injectible iron chelation therapy was available. Like many others, we were not able to afford such an expensive treatment. The result was that my condition become so poor that I had to stop going to school after class seventh. But I continued study through correspondence.
There were many times when I courted death.I remember I was all of seven when my spleen was removed in a major operation. That was when I realized for the first time that what I had could even kill me.
I was in Class XI and fighting a losing battle against thalassemia when a miracle hapened. Kelfer was introduced. Kelfer is a cheap and effective oral iron chelation pills. Thanks to this wonder drug and to the wonderful doctors that have saved my lfe so many time, I am now living a much better life. My health has improved a lot ever since I started taking Kelfer.
Well, I can not help regretting that I could not enjoy my school life or the exciting college life. Many things which form a part of every child's growing up years like school picnics and trips, dances, games etc I could never enjoy.This was partly due to my weakness and mainly due to my parents over protective love. But I am thankful that my health has recovered enough to have allowed me to study comfortably. I did graduation in English (honrs) and then went on to do post graduation in English literature. These days I teach English and am also trying to establish myself as a professional writer.
There was a time when I could barely hold on to my life. Now I enjoy life. I have come a long way but still there is a long way to go. I have many dreams and ambitions. I have to work hard to to become independent. I have to earn my own living and I have to fulfill my one big dream, that is, to become a succesful writer. May be some day I will. I am hopeful. I may never live a normal life. But then perhaps I can live a life more than normal.
One thing more I would like to say to you dear reader.. Although there have been sevral advancements in the field of Thalasemia, still there is no cure.But fortunately, thalassemia can and must be prevented. There are cheap and reliable blood tests available to detect whether you are a thalassemia carrier. Get yourself screaned. A test can even be done on the foetus itself to find out if it has thalassemia. So if you are a carrier couple , get this test done. These tests can save you and your children from a lot of suffering.
Unfortunately, despite the easy availabilty of these tests, a disease which has been succesfully controlled in Italy, has been rapidly spreading in developing countries like India and Pakistan. And the only reason for this is the avoidence of these necessary tests.
So dear reader, get yourself screened especially if you live in Italy, Greece, Cyprus, Sardinia,Turkey, Saudi Arabia, Iran, Afghanistan, Pakistan, India, Indonesia, Burma and Thailand because thalassemia is most common in these countries.
In India, it is most common among Punjabis and Sindhis migrated from West Pakistan, Gujaratis, Bengalis, Parsis and Lohanas. Area wise, Delhi, Mumbai, Kolkata, Maharashtra, Rajasthan, Uttar Pradesh and West Bengal have most number of thalassemia cases.
LET ME REQUEST YOU AGAIN, PLEASE ... GET YOURSELF SCREENED.
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