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Stories of NF: Sarah A

By March 9, 2023January 30th, 2024Awareness, NF1, Story of NF

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.

Favorite Song
Castle On The Hill

Dream Superpower
Time Travel or Flying

Favorite Food
Pizza and Pasta

Fun Fact
I am a baker and I have been baking for a long time. My favorite things to make are cookies, cinnamon rolls, and carrot cake.