Brianna Worden: The Beauty Queen with an “Invisible” Disease

At two-months-old Brianna Worden was diagnosed with neurofibromatosis (NF), an “invisible” neurological disease. Now, at 23-years old, Brianna is an advocate for the NF community, sharing her story and battle while also being a teen beauty queen.

BELLA was able to talk to Brianna about her journey battling NF while competing in the world of Beauty…

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Tell me a little bit about your story? How did you learn about your condition?

At birth, my mother knew something was wrong. I was covered in spots, and she felt lumps within my left arm. She fought for months to try and figure out what was “wrong” with me. Despite being ignored, my mother continued to fight and advocate for my medical attention. My mom then took me to an orthopedist, where I was diagnosed. I was diagnosed with neurofibromatosis (NF) type 1 at two months of age. In my NF, I have a giant plexiform fibroma that encompasses my entire left side (excluding my leg). I also deal with medical concerns such as renal artery stenosis and hypertension, bone disfigurements, chronic pain and fatigue, learning disabilities, and scoliosis. I have endured over 10 surgeries, including three spinal fusions, a wrist stabilization, and three tumor-debulkings to my left arm where, each time, three pounds of the tumor was removed. As a freshman in high school, I was diagnosed for the first time with a malignant myosarcoma (MPNST). The cancer returned two more times after that. Unfortunately, surgery to remove the cancerous tumor was my only option, and when the cancerous tumor was removed from my throat, my vocal cord became paralyzed for six months. While I have my voice now, my vocal cord has partial paralysis.

As of now, I am happy to say I no longer have any malignant neurosarcomas! In fact, I have been cancer-free since 2014!

Just two years ago, tumors were growing at such a rapid rate that surgeries were not an option for me as my skin was not strong enough to heal, and I would be at risk of an infection. As of now, I have been on a clinical study (a form of chemotherapy) for about a year and a half! I am so excited to announce that we are seeing a significant difference in the size of my tumors and the range of motion to my left arm.

Can you explain what NF is and how it affects your body?

NF is a neurological genetic disorder that causes the growth of tumors throughout the body. Everyone is impacted by this disorder differently, and it is essential to note that no two cases of NF are the same. Therefore, my experiences with NF are going to be different from others. In my case, I have renal artery stenosis and hypertension, bone disfigurements, chronic pain and fatigue, learning disabilities, and scoliosis. I have also had three malignant neurosarcomas. My disorder impacts everyday things, there are times where it hurts to get out of bed, and there are times where I struggle to get dressed. I am always worried that someone will bump into my left side, as it causes pain when I am bumped into.

Is there something that motivates you specifically to reach your dreams and goals?

What motivates me is the fantastic support system that I have. It is my goal to advocate and help others. When a patient or a family member with a loved one with NF tells me that my story has helped them, that motivates me.

I also love to perform in theatrical productions—especially musicals. When I’m on stage, I forget about all my troubles involving NF. For a moment, I am not “Brianna with NF,” I am the character I am acting as. Art has always been a part of my life and keeps me positive, so I want to use it in my field of study or future career.

Did you always dream of being a beauty queen or was there something else in life you were aspiring to become?

Of course, I have always wanted to take home the crown, but to me, a true beauty queen is someone who showcases resiliency and positivity. I dreamt (and still do dream) to be an advocate and a motivational speaker. I hope one day I can make a career out of motivational speaking and theater arts, as that is where my heart and passion are. No one should feel alone. Everyone needs someone to talk to who helps them feel uplifted, and I want to be one of those people.

How are you spreading awareness about NF?

As the 2020 Children’s Tumor Foundation Ambassador, I have had wonderful opportunities to use my voice to educate others about NF. Currently, I am a member of the junior board for the Children’s Tumor Foundation, where we work together to advocate for NF. I also stay actively involved whin my theater community so I can showcase disability within contemporary arts. In fact, my mother and I are finishing up a play we wrote about our journey involving NF.

Has your beauty queen campaign affected your NF awareness platform?

Yes! Especially as Miss Teen New York 2012, the crown acts as a megaphone where more people want to stop and listen to my platform, which was about body positivity and neurofibromatosis awareness.

How can people connect with you, to learn more about you and your story?

I am very active on social media! They can follow my story on YouTube at Brianna Worden or on Instagram @Brianna_worden97. I love educating people about neurofibromatosis and always accept questions regarding my story. People can also check out and follow a preforming arts company I have created with very talented peers of mine! The founders and I have begun creating a performing arts company called New Visions Inclusive Performing Arts Company where we aspire to create a safe space for emerging artists. Although we have just started the company and are virtual as of now, all artists are welcome. We aim to connect and create work to showcase art and performance nationally, while also advocating for various platforms like disability and contemporary arts (here is our website)!

 

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