Rare diseases are considered rare, as it afflicts a small number of people in any population; according to the WHO it is less than one per thousand. Therefore, it hardly gets enough attention from governments or from the people in the medical world.
2022
My collaboration with IIT BHU on the #RARE_IS_STRONG campaign also built awareness of India’s national policy on rare diseases. In this discussion, I analyzed the significant provisions of the policy its effectiveness, and its shortcomings.
As part of my efforts to spread awareness about rare diseases, I started a Change.org petition which also requested empowered authorities to help the community of people suffering such diseases. This petition received a boost from IIT BHU.
2021
Living with a rare health condition can take a toll on mental health too, however, some tricks helped me cope.
Getting treated for Isaacs’ Syndrome brought about drastic changes in my diet. In the process, learned to respect every bite of food I ate.
In coming to terms with my rare health condition, I learnt the importance of keeping my emotions balanced, and the difference acceptance can make to life.
I have tried to convey my journey of the past several years in my writings, the latest of which is a song of acceptance and acknowledgment, but also fear and longing.
2020
Laughter therapy is one of the many alternative therapies I tried to overcome my rare health condition. My experience with it taught me that it is easier to succeed with a smile than fall flat.
The treatment I was undergoing for my rare health condition at times made me feel like I was crawling on broken glass. I focused on searching for a more enduring approach to healing.
