Having a rare disease impacts every aspect of my life. I lived with my symptoms for 18 years before I got an answer. Suddenly, everything made sense. Knowing that the problem was in my DNA, and not just in my head was incredibly validating, something I hope that every rare disease patient will get to experience. This piece depicts a DNA helix that forms the silhouette from my advocacy headshot, symbolizing the way that I have been shaped by the mutation in my genes as well as the way that advocacy has given my pain a purpose. Birth Year: 1997