Living with a rare disease as a child can be an extremely difficult and isolating experience. As a result of my health conditions, I looked and acted differently from other kids my age. My rare genetic condition, amelogenesis imperfecta, causes incomplete or missing tooth enamel, which meant I experienced pain while eating, talking and even breathing. I also live with a second rare disease called platelet storage pool disease, as well as chronic illnesses, psychological disabilities, learning disabilities, and auditory disabilities, including auditory processing disorder and hearing loss. As a kid going through these challenges, it would have been helpful to have someone to talk to about living with a rare disease to tell me that I wasn’t alone in experiencing the challenges I faced. That’s part of why I am now a contributor on The Mighty, to help tell my story in the hope it helps someone else to see that representation.
In part because of my rare disease, I was fascinated by mental health, emotion and psychology and how those intersected with chronic and rare diseases. Unfortunately, I lost my close friend, a fellow rare disease community member, to suicide, and I remember thinking, “Is there anything I can do to help people like him? Like me?” Despite my passion for these areas, I still felt like it was a path for “other people” to pursue, because I thought I had all these barriers and limitations that prevented me from achieving that goal. But as I completed my coursework at community college one class at a time with the help of disability services and accommodations, and after I was nominated by faculty to work in the writing center, I started to think maybe I could do it. I started to believe it was possible to pursue my dream.