1. At what age where you diagnosed with Hemophilia?
Ans.1. I was about 1 year old when I fell and bursted open my chin. The bleeding did not stop even over the stitches. When I became pale due to blood loss doctors transfused me, my mother's blood. That also stopped bleeding. Then the CMO there at the NTPC hospital referred me to AIIMS Delhi where I was diagnosed with hemophilia.
2. How it start affecting your daily lifestyle?
Ans.2. Well I have severe Hemophilia that means I suffer from spontaneous bleeds into joints too. These bleeds cause pain and swelling affecting the major joints if proper treatment is not done. And sometimes life threat bleed, I have been through all that. But as I grew bit older I have learnt to be more productive in my work even with these limitations with some precautions and availability of factor injections.
3. Was your family supportive?
Ans. 3. Education yes but when following my dreams they are scared as they still think what a person with rare bleeding disorder will be able to do with own work. As my dreams are not small but big ones. However whatever I am today is because of their support only.
4. Where, when and how did you believe you were more than this condition?
Ans.4. In class 11th, year 2002-03 when I almost died multiple times due to right pulmonary tuberculosis. It took doctors about 9-10 months to correctly diagnose that. I was demoralized and for once in my life I wished for death. But when I survived I knew my life is not going to end this way and that it was meant for a purpose. I was more positive now than before and I started achieving things with more fearless that fearful due to my hemophilia. I realised I was beyond my disease and that I can achieve anything I put my mind into.
5. What was your motivation?
Ans. 5. My life's purpose has been my driving force or motivation. I want to create a positive transformation in society where people with rare conditions and or disabilities can lead a dignified life.
6. Is your lifestyle different than common person of your age?
Ans. 6. Not much different I lead a life that is similar to any normal person just I have to be mindful of my condition and factor availability.
7.Due you have fears in concern to condition you are suffering from?
Ans. 7. Yes, I do have fears not for me as I know my worth and capabilities. But for my parents who are aging.
8. What made you release the site power in me on podcast?
Ans. 8. See Power In Me is my Autobiography book and name of my trust ( Power In Me Foundation). And in our podcast we are trying to talk about rare diseases, health, lifestyle and life of people with health conditions still they are empowered and inspiration for all.
9.What is the purpose of this organisation?
Ans. 9. Power In Me Foundation works in Health, Education, and Livelihood for people with rare diseases, environmental issues and rural development. Ultimately help these special community and their care givers to have a Dignified Life.
10. Your message for the people.
Ans. 10. Rare Diseases are part of the society and its not anyone's fault that they are born with this condition. Please be more empathetic with them and in fact create a social environment where they can get proper health care, education and they will automatically be more productive to the society. You never know your simple act of kindness may change someone's entire life.
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