My introduction to the world of Neurofibromatosis began when I was only three years old. It started with a bug bite on my neck and fevers. This was in 1998, and at that time, not a lot was known about NF. On a visit to our local pediatrician, he could not explain the fevers that I was experiencing at night. Also, on further examination while looking at my back, they noticed that it appeared to be curving to one side. After a CAT scan, he decided to send me to the “big guns” St. Louis Children’s Hospital. After a CAT scan and an MRI, the doctors discovered a tumor in my back. They then performed surgery to try to remove the tumor. At this point, I was diagnosed with Neuroblastoma—a childhood cancer with a survival rate of 50%. As a result of this diagnosis, I stayed on the oncology floor for five days. At this time in my early life, Batman was my hero, so I had a Batman doll at my side at all times, through the various tests and even surgeries.
After the fifth day, before I was to begin chemotherapy, a young doctor entered my hospital room with tears in her eyes, and told us that I did not have Neuroblastoma, but rather something called Neurofibromatosis Type 1 (NF1). Soon after this diagnosis and more tests, I was introduced to Dr. David Gutmann, who over the past eighteen years, has always been there for us whenever we had any questions or concerns regarding NF1.
I ended up developing severe scoliosis as a result of the neurofibroma in my back. It was necessary to have instrumentation, or rods, put into my spine, which was followed by six months of wearing a hot, plastic brace. The upside to that, was that my brace was decorated with kitties, which was very important to a three-year-old girl. That is what we did—making the most of each situation. Each new challenge always looked like a new adventure.
After all of that, I had one more challenge. More surgery faced me in the fall of my sixth grade year. The curvature of my spine had become more severe, so I went through six weeks of traction. I was in the good hands of a world-renowned orthopedic surgeon at St. Louis Children’s Hospital. My mother and I had a seven week stay in the hospital and to say the least, we made the most of it. To begin with, I had a halo put into place for traction, and it was decorated with the most beautiful rhinestones. My stay was during the month of October, so my hospital room was decorated for Halloween, which allowed us to go on many “journeys” throughout the hospital. The last night before my six-hour surgery just happened to be Halloween, and in the spirit of St. Louis Children’s Hospital, there was trick-or-treating and fun Halloween festivities to take our minds off where we were heading. Oh, and I dressed up as a leopard with great face paint. The next day began with a six-hour surgery, now the fun was over, but it was worth it, because the traction had made me straighter and a few inches taller.
Fast forward a few years. I have always had big dreams, so when I was in high school, I really wanted to attend the University of Illinois to study graphic design. Throughout high school, I was in love with biology, music, and the arts. Those were the classes that I exceled in, but I had always had problems with mathematics (I had found out later that could be caused by NF1), which sometimes did make high school a little difficult for me. I was always worried that I wasn’t good enough to get into so a prestigious school, but through hard work and dedication, I made it, and entered The University of Illinois as a freshman in the fall of 2014.
The University of Illinois has provided me with some of the best times of my life. I am taking design classes to prepare me for my future career, and have joined various clubs and a sorority on campus. In addition, I cheer for my school in sporting events until my voice gives out. I can’t begin to count the number of amazing people that I have met and I am continuing to meet.
Halfway through my college career, I became more curious about NF1 and what it could have in store for me. I remember one night after I researched it for hours, I learned so many things about the condition I have had my entire life. Why or how I would do things and why I looked the way I did, and also why I had gone through so many of those tribulations as a kid.
NF1 has made me a very strong person, and continually makes me stronger every day. I will never let it stop me from doing the things that I love. During my junior year, I decided to combine my interest in graphic design with a deep passion for medicine. I’m not sure if that stemmed from being in and out of the hospital as a kid or from reading countless National Geographic magazines. After researching potential career options in medicine and graphic design, I stumbled upon The Association of Medical Illustrators website. These are the people who design all of those colorful pictures in your biology or anatomy book. This is exactly what I want to do with my life.
In the summer of 2017, I was awarded an internship as a graphic designer at the Washington University Neurofibromatosis Center, where I have been creating medical illustrations. I am so appreciative for this opportunity. A big thank you to Dr. Gutmann and his staff. This internship has provided me with an amazing opportunity to have a taste of what my dream job would look like.
Written by Alexandra Schroeder
Please check out Alexandra’s wonderful illustrations as they are posted on the Gutmann Laboratory website this fall (gutmannlab.wustl.edu).