Stories of NF: Katie G.

When I had just turned four years old my mother became very concerned. She noticed I had a lot of bruising. She thought I might have leukemia, but the bruises weren’t going away. The pediatrician looked at my cafe au lait spots and measured my head. He then stepped out of the room and he brought one of the other doctors in the group in. By the time my mother and I had left, all five doctors in the group had looked at me and referred us to the genetics department at the Los Angeles children’s hospital. When we left the pediatrician’s office, my Mom went straight to the library and looked up everything she could on NF.

Due to my NF1, I have had a few complications ranging from bone abnormalities to tumors. I broke my left arm as a child and had a non-healing fracture from the time I was in Kindergarten to eighth grade. I was in and out of casts and wore a brace for the majority of the time. My arm puzzled many doctors and it was decided that when I finished growing that surgeries would be attempted. When I started eighth grade, my arm had been causing a lot of pain and my elbow kept popping out. After many different doctors throughout my life, we had finally found a doctor that had a plan. I had three surgeries that school year. One was putting an external fixator in my arm. I had to tighten it every day, every few hours, so that my bone would move. My second surgery, they took four inches out of my leg and hollowed it out to put over the dead part of the bone. I then had a total of six pins sticking out of my arm and wrist with a bar connecting it. The third surgery was to take everything out. I still have three wires in my arm. I eventually had to have two more surgeries to reconstruct the wrist. My bone had become completely arthritic and started causing a lot of pain.

Another complication I have had with NF is tumors. I have a couple of visible neurofibromas on my back. I found out I had a brain tumor when I was in high school. I remember it very clearly. I had a small bump on the side of my head. I didn’t think anything of it at first and I thought that I might have bumped it during the night. It hurt whenever it was touched. Throughout the day I became very tired and in a lot of pain. I spent the next two days in and out of the ER. I was then sent to a neurologist who confirmed it was a tumor. Luckily, after what felt like forever, it went away on its own. There have been other tumors, but the one that caused me the most daily pain has not come back.

I work in technical theatre, and NF will impact my future heavily. I frequently need to use both arms to load in and load out theatrical shows. I also need to be able to run shows and move scenery pieces. When my arm or wrist starts to hurt again, it affects my job and my performance. As a Stage Manager, I need to be readily available, but having an arm in that much pain hinders that. Having a brain tumor in the past also continues to affect me. Whenever I get a headache it is a lot worse than before I had the tumor. Normal headaches tend to knock me out for the entire day, or longer. This is not ideal when I have shows to run.

Because of my NF, I was able to find my career path. When I was a lot younger, I was always seen as the outcast. I could not participate in physical activities like the rest of my schoolmates. So when it came time for PE or similar activities, I always had to sit to the side. My arm had become somewhat of a label for me. I became known as the girl with the arm. When I got to middle school, we had to alternate classes for a week until we went through all of the electives (art, band, PE, theatre, etc). Because I could not take part of the week in Gym, they decided to put me in Theatre for two weeks. I was, of course, against this. I had seen kids in theatre being treated as outcasts. I did not want this for me because I was already seen as the outcast so I did not want a bigger label. But once I had my first week in a theatre class, I knew that I was wrong. Everyone accepted me for who I was. They did not see me as the girl with the arm. I was just Katie. Or I was whatever character I was playing. I found a home in theatre. I continued with it all throughout school and eventually moved to Boston. I am professionally working in theatre, and I hope to advocate about keeping arts in the schools. Because of theatre, I felt accepted. I no longer constantly let my NF or my arm define me.