Sophie Shah

Living with several invisible chronic illnesses has shaped every aspect of who I am. For me, it means navigating many parts of my life completely alone, and grappling with systems not created for patients like myself. There are moments where I have felt behind my peers, and frustrated when I cannot rely on my own body. But it has also given more than I could have ever imagined. The dicipline, stregnth, and drive it takes to manage my conditions permeates into every aspect of my life. My conditions have made me comfortable with the uncomfortable, allowing me to push myself beyond my comfort zone, and redefine my own idea of strength. It has given me a unique glimpse into the battles that so many fight silently, and ultimately led me to my passion for patient advocacy.

I advocate because I have seen how our systems and general lack of awareness impacts patients firsthand. Between my own experiences navigating the heathcare system, and my work with patients - I have only come to recognize more cracks that individuals fall into. I am also lucky enough to have witnessed the transformative impact of advocacy. Seeing entire lives be changed by small changes in policy, or their stories being platformed inspires me to do more for this community.

I am the founder of a global patient advocacy platform 'Chronically Me', and my work there centers around sharing patient stories and creating a cohesive community for patients to connect. Through that work, I have been privlidged enough to work on several campaigns and advocacy projects, to publish research about the disability insurance eligibility system in the US, and fundraise for broader patient reforms.