“Do not be defined and controlled by whatever disorder you have. Know your limitations, but also know that limitations are there to be defied! Go out and do whatever you like in life and whatever is possible for you to do. Don’t be controlled by your genes”
The quote above is a strong message given by Namitha, who has redefined her life from being a Thalassaemic to being an evangelist for change against genetic diseases.
Namitha is a PhD student working on disability and psychology at the National Institute of Advanced Studies, Bangalore.
She was 4 years old when she was diagnosed with beta-thalassemia and there were frequent visits to hospitals and doctors. Though this affected her participation in activities in school, it did not deter her spirit. She was good at speaking which made up for her sports restrictions. She participated in debates and speech competitions, and went on to do her Master’s Degree in English.
Though Namitha fought her way through the odds, her life has not been an easy ride. She went through endocrine disorders, and now has Diabetes due to transfusion hemosiderosis. In 2013 she nearly lost her life to liver failure following a 3-week flu. She remained in a hepatic coma for 4 days, but won the battle of life.
She has learnt to live her life beyond her disability and also reaches out to others to join a crusade against genetic disorders. Now, she admits openly that she is Thalassaemic and has no qualms about it.
Jyoti is a a passionate novelist, blogger and a speaker.
Jyoti chose to live her life to the full despite being a Thalassaemia patient. Most of her childhood was spent juggling between her education and hospital for blood transfusions, so much so that she even had to drop out of scho
ol. However, Jyoti still emerged a winner. She not only completed her schooling, but also got a Master’s in English and Applied Psychology. Her passion for reading motivated her to publish her first novel — Dream’s Sake — in the year 2011. She also went on to self-publish her second novel — Lemon Girl — in the year 2014. Both her
novels have garnered positive reviews from both readers and critics. While her love for reading and writing is second to none, she is fascinated by technology too, and writes about various gadgets and products at www.technotreats.com.
As her name suggests- Jyoti is a ray of light in the darkness, giving hope and spreading positivity.
Meet Rahul Kapoor, who wants to study medicine to help other people.
Rahul was born with Thalassemia. Since then he has had a blood transfusion every other week, which normally takes 7-8 hours. There have been a lot of complications, especially transfusion-related iron overload which requires a daily drug treatment and can potentially damage the heart and the liver.
He is studying microbiology at the University of Georgia and wants to study medicine so that he can help people. His goal is to study hematology, concentrating on blood diseases. Eventually, he would really like to travel the world and treat patients in places where blood disorders like thalassemia are especially prevalent.
A thalassaemic patient’s life can be seen as a journey of constant pain and limitations. Indeed, people face many challenges and this should not be dismissed. The requirement of regular blood transfusions, the uncertainty of life, and being viewed differently can make things very difficult. But then, as they say “the same boiling water that softens the potatoes, hardens the egg”. There are bravehearts who won’t let Thalassemia be a barrier to their dreams, their ambitions and a chance to contribute to society. Their inspirational stories tell us that although these people do have thalassemia, they won’t let thalassemia define them.
Are you a person with thalassemia with a story that you would like to share with us? We would love to hear from you! Please get in touch by emailing firstname.lastname@example.org.