Meet Me

My name is Natalie McGuire. I am a twenty year old senior at the University of Michigan. I am a daughter, a sister, a friend, a dog person, a feminist, a Canadian, an immigrant, an avid reader, a music lover and so many other things. The thing that I’m probably the least likely to tell you is that I am disabled. I like to think of myself as a person with a disability rather than a disabled person. While this seems like a silly thing to the able-bodied, I don’t want my disability to define me. It is a part of who I am, but it isn’t my entire identity. Upon first glance, you probably won’t notice I’m disabled. I’m not in a wheelchair, and I don’t use any other assistive mobility devices. I also have full mental capacity. My disability is Fibrodysplasia Ossificans Progressiva.

I was diagnosed with FOP in 2011 when I was ten years old. That same year I lost all upward mobility of my arms. In the span of three months, I went from full physical functioning to not being able to raise my arms above my head. This was the result of bone forming under my arms that prohibits movement. My FOP was fairly dormant for the next few years with small flare ups here and there. It came back in full force in December 2016. My neck and shoulders began to swell. This was the first time that FOP had affected my facial characteristics which was very mentally challenging. The swelling eventually went down and I didn’t lose any jaw or much neck mobility. Then, my arm began to swell in April. I had flare ups in my upper arm and my forearm. They eventually moved towards each other and I lost the ability to straighten my right elbow. Most recently, I had a flare up in May 2019 that locked my jaw. I have about 1 cm of opening between my teeth. This has by far been the most challenging flare to date both physically and mentally.

I never talk about FOP unprovoked; I try to suppress it to the moments it’s absolutely necessary and nothing else. However, I’ve recently realized that not talking about it is a detriment to my own physical and mental health. Not telling people puts me in anxious and possibly dangerous situations. Not only have I decided to share my story for selfish reasons, but I also finally understand my responsibility to raise awareness for FOP, rare diseases, and disabilities in general.