adapting to life with a rare disease, FOP.
Throughout my youth I was very self-conscious, tentative, and reserved. My insecurities were greatly heightened by the progression of my disease, FOP, but I hid a lot of what I went through from anyone outside of my immediate family. It was too intimidating to imagine opening up about my struggles and sharing my perspectives on life with…
The past year has been filled with amazing opportunities, new experiences, challenging realizations, and unexpected setbacks. I’ve had wonderful days surrounded by friends as well as very difficult days due to FOP flare-ups. I haven’t shared much about my personal life in awhile, so I wanted to finally write about some of the things that have…
What would life be like without any medical obstacles, serious physical limitations, or extra accommodations? I’d live independently. I wouldn’t need help with everyday tasks. I’d be able to easily maintain college classes or work a full-time job. I’d go on unplanned road trips across the United States with my friends. I would travel the…
Confidence and self-love can be challenging to maintain when you’re living with a disability. My disease, FOP, is progressive so I continuously have had to adapt to new physical limitations. I’ve struggled with body issues and many insecurities throughout my life. Before social media, I had a difficult time finding acceptance – in both society…
My last blog post was in late May, about a month after a very sudden FOP flare-up began in my jaw. In just three months I went from having over one inch of jaw mobility to less than one centimeter. This progression affected many aspects of my life — primarily my diet, but also talking…