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In My Own Words: Finding Out I Had NF

By June 14, 2017February 28th, 2024NF1, Story of NF

By Sarah Gabriel

At age 13 I went in for a checkup, a normal yearly checkup. My goal? To get in and out of the doctors as quick as I could so I could hang out with my friends later on that day. Little did my younger self know, but that one normal check up would change my life and the way I thought about myself. It started with my regular doctor being out sick. I had a different doctor and while sitting on the table explaining my odd feelings in my veins she casually asked, “Do you think it has anything to do with you having neurofibromatosis? Are you anxious about it?” That was the first time I had ever heard that word. I stared at my mom.

Flash forward to me leaving the doctors that day crying, and not fully understanding the concept of what was just dropped into my lap like it was nothing. I was originally diagnosed when I was about 5, after marks called café-au-lait spots were identified on my skin, and I had multiplying lisch nodules in my eyes. My doctor told my parents to not tell me. I appreciated that a lot because I grew up feeling normal and not different from other children throughout school. As for the remainder of that day? I did not go out with my friends. Instead, I locked myself in my room and did the worst thing I could have possibly done to educate myself on neurofibromatosis: I Googled. What I wish I had done, looking back, was go to an actual organization page and get researched facts on  NF. I had much to learn, like that NF affects everyone different and none of those sites I forced myself to click on that day helped me in even coming close to understanding that.

I now understand that I lacked the proper help I needed in school, since I have a learning disability, and was missing a part of my personal self, the thing that made me different. Once I started to embrace it I was inspired to support and spread the word. I told my friends, educated them on it and built a team of 13 girls for the Boston Children’s Tumor Foundation Walk in 2015. Together we came together in a team called ‘Supporting Princess Sarah’ and raised a total of over $3,000 towards NF research! On top of that, we raised the most money out of all the other teams at our walk!

At age 15 I now embrace it as a trait, it’s something that makes me unique and different. I find it extraordinary that I am 1 in 3,000 people to be strong and battle through the roller coaster that is NF. I learned that this challenges me and most importantly: IT DOES NOT DEFINE ME. I can do/be whatever I set my mind to. I have no restrictions. I am a fighter!