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Stories of NF: Alexandrea L

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

As a child, I always had “spots” that made me different from everyone else. It was around middle school when those differences started to be pointed out more, and I began to notice that certain relationships weren’t going to happen because people didn’t understand. My family didn’t intentionally treat me differently. They never made fun of me or mocked me as I changed, and they often came to my defense if they felt someone was making fun of me.

High school and college were when my fibromas became prominent, and although I was pretty social, I was super self-conscious and I hated my life. I hadn’t known too much about NF, and I had never seen anyone else with it other than my father and one of my brothers, so I didn’t know how to explain it to others. Thankfully, I had never had any other complications, other than being unable to have a large tumor removed from my arm due to it possibly affecting the use of my hand.

I am a mother to an amazing 10-year-old who also has NF1. I’ve been a registered nurse for just over one year and I am loving it. I like to hang out occasionally, but I’m coziest at home, so, I love hosting my friends at my house for the weekend and for different holidays. I’m starting to enjoy being a content creator and seeing my growth on social media recently. Finding different ways to connect with people and make them feel like their best selves is ultimately what gets me going!

I think knowing that my daughter would be born with NF really shifted the way that I thought about my own confidence. I didn’t (and still don’t know) how her diagnosis progress, but I told myself that I would never go a day without making sure that she knew that no matter what may change about her, she’s incredible and there’s nothing anyone can do about that! With that, I knew I had to believe it for myself first.

Living with NF has definitely affected my mental health, relationships, and even my ability to obtain jobs. However, with social media, it’s given me the ability to be a representative. It’s opened doors for me and placed eyes on me that probably wouldn’t have happened any other way. I didn’t anticipate educating people or being a source of inspiration for others with confidence issues, but here we are! I always tell people, “NF DOESN’T STOP THE SHOW!” My plans for my life will never be derailed because of my diagnosis.

Favorite Song
Forever by Jason Nelson

Dream Superpower

Favorite Food

Fun Fact
I cook and sell boiled peanuts!