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I wrote this initially with college in mind, but thought I’d share it. [:

I have learned quite a bit from the various challenges I’ve had to face within the past eleven years. Everything that I’ve accomplished and overcome has just made me stronger. I have a rare bone disease, FOP, which affects one in two million people worldwide. FOP stands for Fibrodysplasia Ossificans Progressiva, which basically translates into “progressive bone growth”. I live with chronic pain and limited movement, but that doesn’t stop me from achieving my goals in life. Though my disease often fits under the category as ‘disabled’, I try to not think of myself that way. I am very able. If I come across an obstacle, I always find a way around it. I try to be as independent as I can be, and not let my condition define who I am. I believe that I can do anything I put my mind to despite my circumstances.

The very first symptom I experienced was a stiff neck on the way to school in 1999. I mentioned it to my mom, who naturally assumed it was from not sleeping correctly. I went through many different doctors until actually being diagnosed. Several years later, we were able to connect with the FOP community (IFOPA – International FOP Association) and met others with the disease. Small bumps eventually formed over my back. Since my diagnosis, I have gradually lost a lot of the mobility in my arms, neck, shoulders, and jaw. It’s hard to bend over or sit on the floor. However, each day I work around these challenges.

Some of my various daily challenges include styling my hair, getting dressed, and cooking. I have two custom hairbrushes and a reacher I use at home. I’m generally very independent, but I do ask for help on the days I have more severe pain. In school, I use the elevator in school on a regular basis because walking up and down the stairs easily wears me out. I try to go the shortest distance to my classes so I don’t lose my breath. I have restricted breathing due to my lungs being compressed by the extra bone that has formed. Therefore, I can’t participate in any vigorous activities, and have to be careful when exercising or walking longer distances. Also, I have a padded desk chair in each of my classes along with a regular desk. I’ve slowly become more and more comfortable with being different than my classmates. I’m thankful that they don’t really seem to mind anyway, which makes me overlook it as well.

Living with FOP and overcoming the challenges has helped me to appreciate every little thing in life. I try not to negatively judge others, for they might have problems that they’re dealing with as well. I live each day in the moment. I’m excited and anxious for my future, but don’t get ahead of myself. I’m very empathetic towards others, and I love helping people with their challenges. As Jeannie Peeper, a very courageous woman living with FOP (and the founder of the IFOPA community), once said, “FOP has not defined who I am but it has certainly defined my journey.”