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Submitted by PatientsEngage on 12 October 2016

Simi Bhatia, 16-year-old college student, is a thalassaemia major patient. Here, she shares the story of her life where her positive outlook leaves little room for grief and despair.

I was born with Thalassaemia Major. My parents tell me I was one-year-old when I was clinically diagnosed with the disorder. I used to be constantly sick with fever and chronic cough. My general physician recommended some tests to check my complete blood count (CBC) and haemoglobin level.

Sadly, the tests showed decreased haemoglobin and red blood cells production. The doctor, after reviewing all my reports, told my parents that I had thalassemia major. My parents did not know how to react initially. They had vaguely heard of thalassemia and knew it had something to do with blood, but were unaware of its full implications. It was only when the doctor told them that blood would have to be pumped out from their daughter every two weeks to keep her alive, did the news hit my parents hard. They broke down and sobbed bitterly before the doctor.

Isn’t there any other way to help our child, asked my parents?

The doctor told them if they wanted, they could pay Rs10 lakh and get a bone marrow transplant, the main cure available for thalassemia. But that option was beyond the reach of my father, a salaried person.

Like most people, my parents too were unaware that they were thalassemia minor and that there was a high possibility of their child being born with thalassemia major. They had been asymptomatic and experienced no discomfort all their life, hence never bothered to get themselves checked. In fact, my father was a regular blood donor, and since the basic parameters were all okay, the thought of any abnormality never crossed his mind. It was only after I was diagnosed with thalassemia that they discovered that they were carriers of the disorder.

How to prevent thalassaemia?

So, my first blood transfusion was given when I was 14-months old. Since then my mother has been taking me religiously to the hospital every 15 days, because I needed to undergo blood transfusion twice a month. I don’t have memories of the early days. I believe my mother would turn her face away when the nurse would come with the needle. Even today, although I am 16 now, she drops all her work to accompany me and hold my hand. She has been there for every sitting.

I receive two units of blood during my transfusion. Each unit takes about 3 hours. So I am in the hospital for at least six hours. I have completed nearly 400 sittings in the last 16 years. When I was in school, I used to go every alternate Thursdays, because my school would be closed that day. As a child, the pain during blood transfusion was a bit irritating, but now I have got so used to it that it doesn’t bother me anymore. It has become part of my routine.

I have been leading an absolutely normal, regular life, like all other kids of my age. There have been no constraints or restrictions. My parents have been most encouraging and supportive in everything in I do. I have been actively participating in my school elocution, debates and speeches. My diet is regular. My mom is a good cook, so I often call my friends over home for lunches and dinners. Sports was a bit of a weak area for me, and I never really pursued it seriously. The only thing my parents are particular about is my medicines. There is no compromise on that.

I have not told my friends that I have thalassemia, except for one or two. But recently, I was added on a WhatsApp group of thalassemia called ‘YTA’, a youth thalassemia group. All posts are related to thalassemia. Some are sad, but some are quite inspiring also. Like I read one piece on a lady with thalassemia who has two kids and how she is bringing them up.

Now I am in college. I am currently studying commerce and wish to pursue my CA (Chartered Accountancy).

My only grouse about thalassemia is that my growth has been affected. Growth retardation is a common occurrence among people with thalassemia. I am quite short, much shorter that other 16-year-olds. Thankfully, it is only once in blue moon that I get depressed about my state.

My mother seeks consolation in the fact that at least I can attend school and college, and can be independent. There are others who are not as fortunate as me. My mother thanks God every night for it.

The message I would like to give to people, especially youngsters with thalassemia, is - Stay Positive. Be Normal.

(Name changed on request)