Stories of NF: Sarah A

I was diagnosed with NF1 at the age of six years old. I don’t remember the early stages (of my diagnosis), but I remember my parents always being at the hospital with me. Before I was diagnosed, I constantly had headaches and would hide under the couch because the light was so painful. However, I was taken to Albany Med Hospital and had a brain surgery.

At first, and sometimes still, NF1 has impacted me for negative reasons because of the cafè-au-lait spots, which made me think negatively of myself. Sometimes, I wish academics would come easier for me, and sometimes, I would blame my NF1 for the lack of making friends and sometimes struggling in school.

Some defining factors for me have been my high school career and the relationships I have made with my friends and teachers. My teachers taught me to advocate for myself. I learned that I was making an incredible path and I am doing the work to help me be successful with my future.

Ever since I was younger, even during my surgery, I was always happy. I would run and dance around the whole house to “Party In The USA” by Miley Cyrus. When I had my surgery I was still always smiling. The first thing I asked when I woke up was “When can I go to school?” and “can I go out for Halloween?” I loved all my friends and teachers and always looked forward to going to school. I would always wake up from school with a smile on my face. Sometimes, I would wake up at 3:00 am thinking it was time for school, waiting and dressed ready to go.