I originally shared a letter I wrote to my rare disease, FOP*, in March 2015 as a way to process what I was going through. (If you’d like to read it, click here.) My life has recently changed greatly due to FOP’s progression, so I decided to write a new version of this letter. Dear…
Category: Living with FOP
12 Facts About FOP in Honor of Rare Disease Day
Yesterday, February 28, 2021, was Rare Disease Day! We celebrate on this day because the ‘rare’ Leap Day of February 29th only occurs once every four years. Everyone comes together on the last day of February to share their diagnosis stories, spread awareness, and show support for their incredible communities. Alone we are rare, Together…
Frequently Asked Questions
After an amazing year (and only one other blog post), I’m slowly beginning to get back into blogging. I definitely needed to take some time off, just so I could focus on enjoying my travels! I’ll be posting some updates soon, but for now I wanted to begin this Question & Answer blog series. I’ve always enjoyed…
Letter to Loved Ones
Dear friends and family, I know it may be difficult for you to see what I’m going through, whether it’s through my personal posts or updates when I’m not doing well. I understand if you feel overwhelmed and intimidated at times. You may have never known someone as medically complex as me before. Maybe you’re not sure what…
Filming for CNN!
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…