My name is Namitha from Bangalore.
I want to share my story to empower and enable others to come out as well. I am now a PhD student working on disability and psychology at the National Institute of Advanced Studies, Bangalore. I have come very far from where I began with beta-Thalassemia.
I was four years old when I was first diagnosed. I was falling sick frequently and my heart beat was very low. Finally I was diagnosed by hematologists who put together a line of treatment for me with monthly blood transfusions. I had a spleen removal surgery in Switzerland when I was 5. I had to be on continuous antibiotics for a year after that as spleenectomy affects the immune system.
Though I had Thalassemia and my life was a collage of visits to hospitals and doctors, I had a fairly happy childhood. Though I couldn’t join in all activities at school or at play, I managed to put in a good bit of games and fun. Sometimes I was very angry when I couldn’t play like others but soon I discovered other things to do. I was good at speaking so I made up by participating in debates and speech competitions. I completed my school successfully and joined college. I took up a Master’s Degree in English.
Adult Thalassemia has its own share of complications and I went through a severe crisis with endocrine disorders. In 2006, I first realized my life was going to be very different from others. Till then I somehow thought Thalassemia will not affect me and I can be like others. I finally realized the truth that Thalassemia has to be accepted. I got Diabetes due to transfusion hemosiderosis in 2007.
My endocrinologist Dr Arpan Bhatacharya at Manipal Hospital, Bangalore has been very supportive and extremely good with my endocrine care. He encouraged me to get out of my limitations and do other things. I was working with Target Corp (retail chains in the US) in Bangalore during this time and I started taking interest in community giving. I won the Best in Community Award in 2007 for my activities.
In 2010, I joined the PhD programme. I am now in my final year and I have done very well so far. I did field work with people with disabilities (physical and sensory) and found that we share common narratives. Narratives of struggle, pain, faith and a lot of hope. Last year in August 2013 I nearly lost my life as I went into a liver failure following a 3-week viral flu. I remained in a hepatic coma for 4 days but came out of it alive and kicking. I had a load of complications at this stage and needed 5 units of blood transfusion. My liver functions had skyrocketed and I was living on IV fluids. Somehow I fought back and came home in September.
I knew I had to stay alive to complete my PhD. With support from my family, friends, colleagues and professors I bounced back to full living. At this stage I realized that I should justify my life on Earth by joining the crusade against genetic disorders. Finally I came out to everybody that I had Thalassemia. I no longer felt angry saying so. At this point, I continue to join hands with others with genetic disorders as we all share genes that went wrong. I interact with people who have Hemophilia, LSD and other genetic issues. I feel a strong kinship with everybody and I hope for treatment and cure for all genetic disorders.
From the time I was diagnosed to now, my family keep up the search for a cure. My grandfather, a chemistry professor wrote to a number of doctors and researchers in the US including the controversial Dr Martin Cline. Hope dances like a star above the horizon. Gene therapy for Thalassemia is in the first phase trial. The retroviral-mediated globin gene transfer has been successful in inducing a fully functional globin gene thereby cutting out the need for blood transfusions.
I am thankful to Dr Michael Sadelain and other doctors and researchers who have been working at this. I am hopeful of being cured in my lifetime along with my other friends. I await the day gene therapy comes to all of us. If there is something that I would like to tell people with Thalassemia or any other genetic disorders, it is this: 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!
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