Overcoming Adversity: A Journey of Resilience and Advocacy

From an early age, I faced challenges due to my physiological condition. Despite numerous doctor visits, they remained undiagnosed until my twenties. Finally, in 2020, I was diagnosed with mitochondrial neurogastrointestinal encephalopathy (MNGIE), a rare disorder affecting mitochondrial DNA.

My journey towards diagnosis was long and difficult, but it fueled my determination to raise awareness about rare diseases. Through platforms like Rare Revolution magazine and interviews with news channels, I've shared my story to shed light on these often overlooked conditions.

Awareness is crucial not only for early detection but also for advocating for better treatment options. In India, facilities for enzyme replacement therapy, a potential treatment for MNGIE, are lacking. By uniting those affected and advocating for change, we hope to improve access to vital treatments.

Throughout my struggles, the support of my family, friends, and colleagues has been invaluable. They've taught me to believe in myself and my abilities, even when others doubted me. Their encouragement has propelled me forward, and I now work as an analytics consultant, grateful for the understanding and support of my team.

Despite the challenges I face, I remain optimistic about the future. I believe in the power of perseverance and determination. While my health may currently limit me from skydiving, I hold onto the belief that one day, I will soar.

My journey serves as a reminder that empathy and understanding can make a world of difference. By supporting and uplifting one another, we can overcome any obstacle and achieve our dreams. So, I encourage you to believe in yourself and trust in your journey – for with dedication and resilience, anything is possible.