Brianna Worden, of Upstate New York, is an energetic 22-year-old who has participated in beauty contests, even winning one title in 2013, loves to sing, and had earned her Bachelor’s degree in Psychology.
You would never think that she has tumors covering half her body.
Meet this incredible young woman below.
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Video credit: Rumble
Brianna had been diagnosed with Neurofibromatosis (NF) Type One when she was two months old so her left side from the neck down has tumors both in and outside her body. She had to learn to walk again when she was eight years old as well learning to speak again following one difficulty surgery (she has had 10 in total).
Brianna said: “It’s just an everyday battle that I face. A lot of my childhood was spent in hospitals, kind of like in movies when you’re looking at the child looking out the window looking at everyone else having fun.”
But Brianna has always been strong.
Janna Walter, Brianna’s mom, said: “Brianna’s personality is like sunshine. She’s always positive. She has challenges for sure. However, she doesn’t let those challenges get in her way.
”I’ve been told by a variety of different doctors at different times in her life, ‘she’ll be lucky if she makes it to age seven’ or ‘she’ll be lucky if she makes it to age 15, she’ll be lucky if she makes it age 20.’
“She’s still really strong. She’s a fighter, she’s amazing, and we’re really glad she’s still with us.”
Brianna even won Miss Teen New York in 2013.
She said: “Although NF know causes a lot of deformities, I wanted to break the stereotype of pageantry because with the pageants it’s not just going on stage and looking pretty, you have a platform.
“So, I decided ‘why not use NF?’ because I noticed when you have a crown on your head or something sparkly, it’s kind of like having a megaphone.”
Brianna took advantage of the spotlight by educating others about her condition. The tumors are most obvious on her left arm and had ‘debulking’ operations done three times to reduce the mass of the tumors but the tumors kept growing back. The skin on her arm has now become so thin that further surgery is impossible.
She is also undergoing chemotherapy while using a clinical trial drug. But she faces other issues such as hypertension, deafness, and blindness.
To add to her woes, she was diagnosed with cancer during high school as she was in the midst of practicing a difficult cheerleading routine.
“I lifted my left arm to do a jump and my shoulder completely dislocated,” she explained. “My shoulder actually went right into my chest.”
A PET scan revealed a new tumor in Brianna’s chest and that’s how she found out she was one of the ten percent of NF patients who develop cancer.
“There’s not really a treatment that you can do,” she continued. “You can have radiation but with radiation it makes my Neurofibromatosis grow.
“So I just said ‘you know what, we’re going to remove it and whatever happens is going to happen.’”
She underwent numerous surgeries to remove new tumors but a particularly painful one involved doctors opening up her throat.
“When they removed it, I woke up and I couldn’t talk,” said Brianna. “What happened was the stress of the surgery and the swelling and the intubation caused my left vocal cord to be paralyzed.
“They did an exam where they stick a camera down my nose and into my throat and they said, “You may never be able to talk or eat normally again, and you won’t be able to sing.
“Singing is my passion so my heart just broke. Instantly I was depressed.”
Because she couldn’t use her left arm normally, sign language was out of the question. She had to communicate through writing.
But she shocked doctors by learning how to speak again despite feeling her “world was slowly caving in.”
She said: “I had to do six months of speech therapy and they don’t know how, but I can now talk. I can eat solid foods and I can sing.”
And when her voice finally came back: “I was trying to yell over my dog to talk to my brother because no one could really hear me. I had a very squeaky voice.
“There was a little ‘click’ that we heard and then I just had my voice, simple as that. Doctors don’t really know how.”
As if her medical issues weren’t enough, Brianna also had to face judgment and negativity from others.
“With NF there’s a lot of bullying involved,” she said. “It’s funny, it’s not really from people my age or children, it’s actually a lot of adults.
“The issue is, if I wear makeup, I look too healthy. If I don’t wear makeup, I look too pale. So I’ll have people say, ‘Are you really sick?’
“I’ve had people tell me I had MRSA. I’ve had people tell me I have Ebola. It’s just kind of crazy, but I don’t care.
“If I hear them say something negative towards me it does hurt but what I try to do is always be like ‘hey, would you like to know more about it?’ Because I’m not contagious, it’s tumors.”
But Brianna’s positive outlook always shines through, especially in her YouTube videos, a platform she uses to educate people about her condition.
She’s also writing a stage show along with her mom that tells of their shared journey.
Janna said: “The amount of pride I have equals the amount of love and it’s never-ending. Just when I think that Brianna has hit her plateau of what more can she do to shine, she does something else that blows me away.”
Brianna made her mom even more proud during a recent fundraiser for her daughter’s treatment.
As she was thanking the attendees, she said: “I promise you I will never give up my fight for NF. I will always continue to fight for my life but also fight for the lives of other NF patients to help find a cure.”
“We don’t know how long I have with NF but I am going to rock my life. I am going to live it with the people I love most.”
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