I was five years old when my parents noticed something may be wrong with me. I had complained of a stiff neck on the way to school in the fall of the same year, but we assumed it was due to sleeping the wrong way and didn’t give it much thought. By the end of the school day, my neck seemed to be slightly tilted in an abnormal position. After meeting with four different doctors and having numerous genetic tests done I eventually got the diagnosis of Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare and life-threatening bone disease, in January of 1999. FOP is "one of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another." (ifopa.org)
FOP affects 1 in 2 million people, but there are only 800 confirmed cases worldwide. I have lost full mobility in my neck and partial mobility in my arms, legs, and jaw. I also deal with chronic pain, scoliosis, bony lesions on my back, and a restricted lung capacity due to the extra bone growth surrounding my ribcage. My disease has taken so much away from me, but I can’t imagine my life without it. I see it as a sort of blessing in disguise, not a complete tragedy or misfortune. My circumstances have led me to incredible opportunities, lifelong friendships, strength, hope, determination, and happiness.
