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Stories of NF: Tracy

I was diagnosed (with NF1) at birth. I have had several surgeries to remove tumors throughout my body. Most recently, it has limited my mobility, but my drive to bring awareness has grown stronger, especially since the deaths of my mother and sister. Both of whom died of NF-related issues.

When I lost my sister, I was devastated and completely heartbroken. At that time, my health issues started to become an issue. I was stricken with grief and NF health challenges at the same time. I decided to create a platform that would allow me to change how people look at those who live with NF. I created Styling With NF on Instagram, giving a voice to what others should know about living with an often heartbreaking illness.

I’m a writer at heart; in the last few years, NF has taken away my ability to work. I feel that it is important that I keep my creative mind alive so I can do my best to journal for myself and the benefit of others with NF.

A person wearing a black hat and sweater sits on a couch with their hand resting on their chin. A photograph of a large metal structure is displayed on the wall behind them.

Favorite Song
Lovely Day by Bill Withers

Dream Superpower
To heal all illnesses in the blink of an eye

Favorite Food
Popcorn

Fun Fact
I do not like board games

Clinical Trials
I did a clinical trial that showed positive results in shrinking the tumors. The trial ended early this year. I included an interview done with me with the team at Henry Ford Hospital.