Brianna Worden is spreading awareness about neurofibromatosis

Brianna Worden is the 23-year-old spokesperson for the Children’s Tumor Foundation

She was chosen as the foundation’s national ambassador in 2020. Since then she has educated thousands of people on neurofibromatosis (NF), a genetic disorder of the nervous system that affects cells’ ability to form and grow. It can cause tumors to develop anywhere in the nervous system, including the brain, spinal cord and nerves. 

“It is very important for people to know about neurofibromatosis because it is the most common neurological disorder, but no one knows about it,” Worden told In The Know. 

Worden was diagnosed with NF when she was two months old. Since then she has had 10 surgeries, including three tumor debulkings on her left arm. Each time, three pounds of tumor was removed. 

“Sometimes when I post on social media, people get a little nervous about my arm but I think it’s important to show the trueness of my disorder and what we go through. It’s my life. It’s not something I should have to have. It is a part of me,” she said. 

When she was a freshman in high school, she began to develop malignant cancerous tumors. They developed at the front of her spine and on her lymph nodes near her throat.

“With those, my vocal cord was paralyzed from the stress of the surgery,” Worden explained. “When I woke up I couldn’t talk, it felt like I had swallowed knives. I knew something was wrong. I just looked at my mom, I had to write everything down.”  

Doctors did not think that Worden would talk again. She feared she wouldn’t be able to do her favorite thing: publicly speak to spread awareness about NF. After six months, the vocal cord paralysis subsided. 

These days, Worden uses social media to connect with people around the world to educate them about NF and body positivity.

“I hope to inspire others with and without NF just to really accept who you are,” Worden said. “When you see someone and they look different than you, you don’t know their story. That’s really important just to accept those for who they are and be a positive role model. Just be kind.” 

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