This 22-Year-Old Pageant Queen Was Born With a Rare Condition That Causes Tumors to Grow All Over Her Body

After 10 surgeries and countless stares from strangers, Brianna Worden opens up about the tumor-causing condition she's lived with since birth.

xNEW YORK CITY, NEW YORK, UNITED STATES - NOVEMBER 20, 2019: Brianna Worden, who suffers from Neurofibromatosis, poses for the camera on an NYC street corner. AN INCREDIBLY resilient spirit has carried a girl whose entire left side is covered in tumors through some unbelievably difficult times. Brianna Worden, of Upstate New York, was diagnosed with Neurofibromatosis (NF) Type One at two months, which means her entire left side from the neck down is covered in tumors - both inside and out. The 22-year-old, who loves to sing, has undergone 10 procedures in her life already, having to learn to walk again at eight years old and even learning to speak again after a particularly difficult surgery. Brianna told Barcroft TV: "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." Mum, Janna Walter, said: "Brianna's personality is like sunshine. She doesn't let 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's a fighter, she's amazing, and we're really glad she's still with us." In her teens, Brianna entered beauty pageants, eventually winning Miss Teen New York in 2013. Her NF is most visible on her left arm, where she has had three 'debulking' operations to reduce the tumours' mass. Unfortunately, each time the doctors removed the three pounds of tumour necessary, it has grown back. Now, the skin on her arm has become incredibly thin, making further surgery impossible. She is currently using a clinical trial drug alongside chemotherapy to try to shrink her tumours, while continuing to do advocacy work and fighting to show she is not defined by her condition. PHOTOGRAPH BY Marcus Cooper / Barcroft Media - NOTE: This Photo Can Only Be Used Within Context With The Informati
Photo: Marcus Cooper / Barcroft Media

At 22, Brianna Worden has racked up some impressive accomplishments. In 2013, Worden won Miss Teen New York International. Six years later, she graduated from Boston University in the top 10% of her class. And since graduation, she’s landed a job as an educator at the Children’s Tumor Foundation.

But all of these achievements didn’t come easily. Worden lives with neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body, which can damage nerve tissue and cause lifelong pain. Worden's condition is most visible on her left arm, where her skin is loose and discolored. These skin abnormalities are the result of the tumors growing beneath the skin in her arms, as well as the many surgeries she's undergone to have them removed.

Worden has had NF her entire life. When she was two months old, her mom noticed lumps all over her left arm. Multiple doctors told her mother that the lumps were nothing to worry about. But her mom insisted on an X-ray, which revealed the severity of her condition.

“My arm looked like it had been twisted,” Worden tells Health. “The doctors even told my mom they planned to call social services on her because of how abnormal it looked.”

Worden’s mom scheduled an appointment with an orthopedic surgeon, who took one look at her arm and immediately scheduled a test for neurofibromatosis. Blood tests revealed that Worden had NF1, a type of the condition that develops during childhood and can cause other symptoms in addition to tumors, such as learning disabilities and bone deformities (like the kind seen on the X-ray).

Doctors also discovered that Worden has a plexiform fibroma (a large, extensive tumor that grows on nerves) encompassing the entire left side of her body, and it's most visible on her left arm.

Throughout her childhood, she was constantly battling NF. At one point her kidneys began to malfunction. When they were finally stabilized, the doctors informed her she would need surgery on her spine. In total, she’s had 10 surgeries—including a surgical procedure she's had three separate times to remove three pounds of tumor tissue on her left arm.

Her health challenges worsened when Worden was a freshman in high school. That's when she was diagnosed with a malignant neurosarcoma, a cancerous tumor that was growing on her nerves. During surgery to remove it, Worden’s vocal chords were paralyzed, leaving her without a voice for months.

“That was particularly devastating,” says Worden. “I love to sing and I was doing a lot of public speaking at the time, so to not be able to talk was really hard.”

Throughout her life, Worden has had three "debulking" operations to reduce the size of the tumors on her arm. But because of the repeated surgery, the skin on her arm is so thin she can no longer turn to surgery to remove future tumors. She is currently using a chemo-like clinical trial drug to help reduce the size of her tumors.

Worden's health journey doesn't end there, and she knows it's going to be an uphill battle every day to deal with the repercussions of NF. She has to constantly be aware of her surroundings, because even a slight bump can cause shooting pain throughout her arm. She's learning to look past the usual stares from strangers and the looks she gets when she's out in public.

But her goal now expands beyond just managing her condition. Worden is building awareness and educating people about NF as part of her work for the Children's Tumor Foundation.

“When I go to a hospital, I shouldn’t have to educate doctors on NF,” says Worden. “I should be able to get the treatment I need, and that’s why I’m so passionate about advocating for this condition. I want more people to know about it, so those who suffer from it can get the treatment they need, early on.”

Worden also wants people to understand that there is always a way to make the best out of your situation, even one as challenging as hers.

"I want to always be the positive person that everyone sees, and even though it can be really challenging with the pain I'm in, it helps to know that my work as an ambassador is helping others with NF."

"The message I really want to send to people is to try to see past what we look like," says Worden. "With NF, we all look different, and our tumors can show in different ways. But be willing to learn and understand that even though we look different, we’re not going to let that define us. We’re more than our disability, and we’re capable of doing the things we want to do in life."

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