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Stories of NF: Hannah L.

By January 14, 2019February 5th, 2024NF1, Story of NF

I was diagnosed with NF1 at 9 months old. My parents truly had no idea what neurofibromatosis was at the time because it was fairly new. I had a bump on my forehead that was quite noticeable, and they were afraid that it was a brain tumor. Thankfully it wasn’t, but it was one of the scariest times because they were afraid of losing me.

I am 22 years old now and just recently graduated from community college. Living with NF1 has never been easy for me. I struggle with self-esteem, self-confidence, and anxiety due to my NF, but I fight through it daily. I am planning on adopting instead of having my own kids because I don’t want my own kids having NF and going through it much worse. It’s always been something I’ve been passionate about and I want to raise children with chance at life.

I am going to school to become a teacher because I adore being around kids and teaching them. I want to shine a light in their lives and be the person they look up to. I want to inspire kids to be who they want to be. I want to encourage kids to take a leap of faith and do anything to their hearts desire. I want to get them excited about learning and being able to see their eyes light up when they learn something, makes my heart so happy.

I have loved Disney since I was 3 years old. It is my happy place. I did the Disney college program back in 2016 and it was an absolute dream come true. I also love reading books and writing stories and have ever since I was very young. I would write stories and read countless of books because I love the way that I get lost inside the world that books and writing create for me. I love Jesus with all of my heart and I strive to live for him every day.

Even though I struggle with many things due to NF1, including a learning disability, I know that I am a fighter. I fight through the pain daily, have gone through countless surgeries because the pain has been bad. My condition is a very mild case of NF, so I find myself very blessed to not have worse issues. I used to be so scared to tell people that I have NF, due to worrying about what others thought of me. I used to feel so lonely and afraid, thinking I was the only one who was suffering. But now, I share with anybody that asks, I embrace who I am, I am a self-advocate for myself and for NF. I have connected with so many people who also have NF, having a group of people who knows what it’s like feels amazing. My family and my boyfriend have my back too.

I may have NF but NF doesn’t have me.


Motto Every life is beautiful

Dream vacation Either Vermont or Disney;
I’ve been to both and love them all the same

Superpower To shapeshift into a dolphin because they are my favorite animal