Patients’ stories

LIVING WITH THALASSAEMIA: A STRUGGLE & MANAGEMENT by Pranab Mishra

Thalassaemia has affected my life from various aspects. I was diagnosed with this disorder at the age of two and thalassaemia has been a part of my life since then. Despite the disadvantages of this blood disorder, it has made and shaped me as a different person.

Thalassaemia is a life-threatening disorder as its serious complications distracted me from normal lifestyle. This disorder has changed my life completely. As a little boy in the early ages after my diagnosis, I obviously did not comprehend the situation and accepted it as a normal part of life. Treatment and complications were troubled with all the physical and psychological aspect. But passing over the years and when I grew, I started to understand thalassaemia. In the 80’s, there were no special care, provision of transfusion and medical facilities for thalassaemics in our state.

At 8 years old, I tried first transfusion & faced heart block during the first attempt, but fortunately I recovered and this had a huge impact on my life and future treatment. At this age, we made the big decision to skip the transfusion regimen, mainly for the reason of heart block. This disturbed many aspects of my life style and for the whole family, making such decision was challenging. During school, I was still not treated fairly as other kids used to tease and bully me, either because of my face, my height and fragile health. So I used to get frustrated many times, but my parents always supported and encouraged me to always look at the positive side of life.

The ages of 12-16 years were a new chapter, as I was moving into another part of my life. I faced by many unwanted situations or decisions that a normal teen faces. I was the shortest in my class, but this never discouraged my feelings and I always maintained a positive attitude.

Living with thalassaemia as a teen was not an easy task. Coping with the situation and expressing your feelings can be hard as you don’t know how the other person handles the knowledge. Restrictions are always present whether in sports or other rigorous contests, activities etc. The age of 26 was a turning point for me, due to EMH (Extramedullary Hematopoiesis) in spine. I fell in the crack of paraplegia, but this was successfully treated by our Experts Doctors of AIIMS Hematologist & group of other Drs by radiation therapy with hyper transfusion which was rare & published in aematologica/the hematology journal | 2007; 92(online) | 29 https://doi.org/10.3324/haematol.10199

Since then transfusion is continuing along with chelation therapy & a new phase of struggling has started & continuing as a warrior. Other obstacles are also in life, i.e. emotional & psychological pressure & pain. Understanding that you are in a unique situation and acknowledging about all of its related issues can be hard to accept but have to accept. Schooling and college life were fun and exciting, but to some restricted extent. Friends and teachers were aware of it after meeting with my parents this helped me in school. On the other hand, I was restricted from doing other things with my friends. I am limited on much physical activities. Though high-school has lot of academic pressure 10 to 04 pm classes that were challenging. So like schooling, college carrier was also very exciting with so many challenges.

I successfully completed my graduation in political science Hons with Distinction then completed LLB & became a Lawyer. I feel myself to be fortunate having such a wonderful treatment & staff of doctors they treat me & till now Dr Tulika Seth (AIIMS) is also guiding me when I need her guidance . Other Dr. like Dr. Alan Cohen(USA) , Dr.Suthat Fucharon (Thailand) Dr Elliot Vichinsky (Oakland) & Dr. Eliezer Rachmilewitz (Israel) had also guided me during my crisis  period of EMH. Since 2006-2007 I have been connected with Thalassaemics in India & they are providing all sorts of help in day today struggling with thalassaemia from blood camp to medicines awareness & by raising the issues of thalassaemics for better & quality of treatment including living with dignity.

Living with thalassemia including associated crises, like EMH, Osteoporosis etc. have bestowed my strength and qualities in me, and has forced to understand how to live with it. I would like to thank my parents, uncle & family my teachers’ colleagues for all their hard work & their support that they have given me throughout my life and career until today and I am also thankful to  Sri.Soumya Ranjan Patnaik ,the Chairman,’AamOdisha’ Sambad Group, who has created a mile stone in VBD CAMP in Odisha since 2006 with the incredible mindset & 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 & willing to donate blood) which has  not yet been possible in other states of India or outside in developed countries also . I would also like to thank our beloved CM Sri Naveen Pattnaik who has taken significant steps to save the thalassaemics of Odisha, with his flagship program of “Jeevan Bindu”.

At the end in conclusion I would like to express all the thalassaemics teenagers & other groups to maintain the positive attitude & be hopeful, optimistic & cheerful in the life. We shouldn’t feel any regret on the remark of others or society because society & other people also are  helping us in living with the thalassemia. So I believe in “Vasudhaiva Kutumbakam” as we depend on others blessing to live a life.  So we must take this as inspiration and motivation to do our best, become better persons in the society and achieve our desired goal.

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