Arsheen Fatima, 22 from Hyderabad, who suffers from Thalassemia Major, talks about how she has learnt to take life’s challenges in her stride, including transfusions every 15 days.
Please tell us a bit about your condition, as in what you are suffering from
I am suffering from Thalassemia Major. It is a chronic genetic blood disorder and its treatment includes regular blood transfusions and iron chelation therapy.
When were you diagnosed?
When I was 6 months old
What were the early symptoms?
Going by what my parents said, my developmental milestones were delayed and I was increasingly becoming pale and irritable.
Is there a history of any kind of thalassemia or related condition in your family?
Yes my elder sister has thalassemia major and in my maternal and paternal family there are thalassemia traits in some of them.
What is your present condition?
I am transfusion dependent and I require blood transfusion every 15 days and I take Iron chelation as well.
What medications are you on?
Defrijit tablets
Kelfer tablets
Desferal injection 5 days a week
Folvite
Calcium
Are there any side-effects of the medicines?
I feel dizzy and nauseous.
What were some of the challenges you faced while handling your condition?
Seven years back I got antibodies due to blood transfusion which was dreadful. But with rigorous treatment, I managed to cope with it.. This was at a time when I was preparing for my 10th board exams. But these challenges didn't stop me from achieving my goals
Have you learnt anything in managing this condition that you wish you knew before?
I have more or less always been equipped to handle this condition, as my family had accepted this condition even before I was born. Additionally, with my sister being also a thalassemia major patient we have learnt to handle this condition.
How did her family handle two daughters with thalassemia
What kind of specialists do you consult and how often?
We have a regular follow up every 6 months. We consult a hematologist and if required a cardiologist, an optholmologist and even an endocrinologist.
What resources are available to you in your city to help you in managing the condition?
We have an NGO called Thalassemia and Sickle Cell Society which provides free blood and medicine on subsidized rates. It has a day care center, a blood bank and a pathology lab, all under one roof.
Have you had to make some changes to your lifestyle because of your condition?
No. Below is a picture of me participating in a thalassemia awareness bike rally held in Hyderabad on 5th May, 2019.
Considering that thalassemia is not much understood by most people, how difficult was it for you to find acceptability?
The struggle is when a few physicians are not even aware of the disease and they hesitate to prescribe medicines for even a simple flu.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No.
What happened when her sister tried complementary/alternatve therapy?
Has it been difficult emotionally to cope with your condition?
Not really because I always had my family beside me.
What was the hardest part of suffering from thalassemia?
As mentioned above, when I got antibodies and during it's treatment, I had to stop my blood transfusion for 2 months and my hemoglobin had dropped to 5gms. I was feeling very weak and was not in a condition to take strain. But at the same time I had to prepare for my 10th boards. I eventually cleared my 10th with 70% marks.
What kept you going?
The belief that irrespective of all the the challenges life must go on.
How has this changed your perspectives in life?
It has helped me to be flexible in accepting challenges, focus on our strengths and stand strong aganst all the hurdles.
