adapting to life with a rare disease, FOP.
My family and I used to manage a greeting cards and gifts company to raise awareness for my rare disease, Fibrodysplasia Ossificans Progressiva (FOP). My life revolved around planning my new card designs, watching my dad scan, print, and prepare the cards, and helping my mom package and label our products for the various craft…
Growing up with a physical disability made me feel as though I wasn’t capable of doing anything without some type of assistance or accommodations. I couldn’t participate in various activities (events, games, sports, etc.) or reach the same milestones (driving, working, college away from home, traveling abroad, etc.). I wanted to experience that same type…