Rather than collectively addressing all rare diseases, this story offers an intimate and honest look at what it’s like to live with a rare, chronic disorder. While everyone’s symptoms may differ, we also have a lot in common. We long to feel normal again. We feel isolated in a world that doesn’t understand what we feel. Part of coping is finding a form of self-expression that can carry us on our worst days and our best ones.
Headlining facts and figures gets our attention. But telling personal stories brings us closer to the heart of the matter. It doesn’t just raise awareness. It motivates. One of the greatest qualities of being human is our ability to empathize. Behind every malady is a thousand personal stories. And this is just one. Putting human faces to clinical names of disease makes it real. And when it’s real, the need for funding and research can then be realized.