By Angela Velasquez
I have an atypical face; my face is not symmetrical. When I am out in public, strangers tend to look at me with a puzzled gaze. They stare because I have a facial disfigurement due to neurofibromatosis. My right eye, which is a prosthetic, protrudes out and overall the right side of my face is slightly lower than that of my left. So, yes, my face is atypical which causes for a lot of wondering eyes.
“I was diagnosed when I was about 18 months old. A nurse recognized the cafe au lait spots and recommended my parents bring me to a neurologist. NF has triggered severe chronic migraines for most of my life. I missed many days of school because of the migraines and I feared I wouldn't be able to work due to them. I worked up the courage to try working when I was old enough and found that I was able to do it despite the migraines; in fact, I began having migraines less often after I stopped letting them hold me back."
Each year, the National Cancer Institute (NCI) prepares a report to communicate to the President and to Congress NCI’s research priorities, progress made to date, scientific areas of opportunity that will advance cancer research and improve patients’ lives, and the funding needed to do so. This year, the FY2019 report included stories to highlight how investments in cancer research help people living longer and healthier lives. One of these stories is a profile of NF Hero Philip Moss.
Did you know that the name Kaiden means fighter or warrior? Even though I am only 9, I have been a fighter my entire life. On April 25, 2016, I had to have my leg amputated due to complications with NF. Losing my leg was very hard for me and everyone in my family. We knew that once the surgery took place, things would never be the same again.
NF1 has been impacting my life since I can remember. I had an optic pathway glioma in my right optic nerve which, when I was younger, pushed my right eye in a weird shape and position in my face (now prosthetic).