The story of PRANAB
Living with thalassaemia has affected my life in many ways. I was diagnosed with thalassaemia major at the age of two and it has been a part of my life since then. Despite its disadvantages, it has shaped me into the person I am today. The complications that come alongside the condition distracted me from a ‘normal’ lifestyle, changing my experience of life completely. I am constantly reminded of my condition as my medication regime is daily. If I do not stick to my medication, thalassaemia and its complications can be life-threatening.
As a little boy in the early ages after my diagnosis, I obviously did not comprehend the situation and accept it as a normal part of my life. Treatment and complications brought with it physical and psychological challenges. However, as the years passed and I grew older, I started to understand what changes I needed to make to cope. Fortunately, my family are medically conscious and encouraged me to do additional research and seek more information on the condition.
In the 80’s there wasn’t any medical facilities in my village for those with thalassaemia which impacted my ability to get blood transfusions. After my first transfusion, aged eight, I experienced a serious reaction causing my heart to develop a blockage. Luckily, I recovered, though it had a huge impact on my life and future treatment. From then on, my family and I made the bold decision to skip the transfusion regime as the heart block was something I could not risk getting again. This extremely challenging decision disrupted many aspects of my life and impacted my family greatly.
Although I tried my best, having to live with thalassaemia did affect my school experience. Over that period, some of my fellow classmates bullied and teased about my physical appearance. My outward features and appearance was severely affected simply because of not having a proper transfusion regime in place, this too impacted my height.
As a teenager, I faced many challenges that a ‘normal’ teenager would not experience. My physical appearance made me stand out in the class, but I never allowed the negative comments to discourage me. Personally, this age was not too hard for me as my principles and family values made it easy to move along. I believe this is something that has shaped me as a person. I also remained positive and motivated based on the support and encouragement of my parents.
During school and college years, my parents always ensured that my teachers were aware of my condition which helped me to succeed academically. School had long days (10:00 am – 4:00 pm) and lots of academic pressure which challenged me every day. Fortunately, I was able to make friends with those who understood my condition even though I was unable to do certain activities with them.
Restrictions were always present whether in sports or other demanding activities. This worsened and at the age of 26 we discovered that I had developed Extramedullary Haematopoiesis (EMH) in my spine. The damage to my spinal cord resulted in paraplegia which is a paralysis of the lower part of the body. At the time this was incredibly worrying, however, it was successfully eradicated by a group of the expert doctors coming together to discuss and prescribe a rare treatment of radiation therapy and hyper transfusions to me. The success and details of the treatment was published in the Haematology Journal Haematologica 2007 which is available via the following link: https://doi.org/10.3324/haematol.10199
Since then, I have had to rely on regular blood transfusions and chelation therapy which unfortunately, has resulted in physical pain and psychological pressure. Although I persist like a warrior, it continues to be a real challenge.
Despite my many challenges, however, I completed my degree in political science, graduating with honours and distinction. I also continued my education pathway by attaining a further LLB degree, and have been called to the bar as a lawyer. I consider myself extremely fortunate to have such wonderful doctors and staff who care for me. I would like to give special thanks to Dr Tulika Seth for being there for me when I needed her guidance, as well as Dr. Alan Cohen, Dr. Suthat Fucharon and Dr. Eliezer Rachmilewitz for also helping me during my crisis period of EMH.
I also started interacting more with the various organisations supporting thalassaemia activities in India since 2006. It is refreshing to be a part of the growing number of groups whose primary goal is to help people living with the condition. Increased support is being now provided to blood camps, access to medicines, awareness campaigns and towards lobbying for a better quality of care. I am hopeful therefore that we will all have a better chance of life going forward.
Living with thalassaemia and its complications has made me develop character building qualities. I feel proud and appreciative of all that I have done in life up to this point. As well as my doctors, I would also like to thank my parents, family, teachers, and colleagues for all the hard work and support they have given me throughout.
I am also thankful to Sri. Soumya Ranjan Patnaik, the Chairman, ‘Aam Odisha’ Sambad Group, who has created a milestone in VBD CAMP in Odisha since 2006 with their incredible mindset and Resolution: ‘Don’t let anyone die in Odisha due to lack of blood’ (even tribal women to literate all the personalities without any hesitation are ready and willing to donate blood) which has not yet been possible in other states of India or outside in developed countries. I would also like to thank our beloved CM Sri Naveen Pattnaik who has taken significant steps to save those with thalassaemia in Odisha by his flags program of “Jeevan Bindu” by organizing VBD camps all over the state.
In conclusion, I would like to express to those living with thalassaemia to keep a positive attitude, be hopeful, optimistic, and cheerful in life. We shouldn’t feel any regret on the remark of others or society. I believe in “Vasudhaiva Kutumbakam” as we depend on others blessings to live a life. I hope I have been able to motivate and inspire you to do your best and achieve your desired goals.
All the best, Pranab.