Brianna Worden was diagnosed with neurofibromatosis type 1 when she was two months old. She has a plexiform fibroma that encompasses her entire left side (excluding her leg). Brianna also has renal artery stenosis and hypertension, bone disfigurements, chronic pain and fatigue, learning disabilities, scoliosis, and has endured over 10 surgeries, including three spinal fusions, a wrist stabilization, and three tumor debulkings to her left arm where, each time, three pounds of tumor was removed. She was diagnosed the first time with a Malignant neurosarcoma (MPNST) when she was a freshman in high school. The cancer returned two more times after that. When she had one of the cancerous tumors removed from her throat, her vocal cord was paralyzed for six months. As of now she no longer has a malignant neurosarcoma.
Unfortunately, her doctors are fearful that she may have thyroid cancer as nodules were found on her thyroid. Currently, the tumors have grown back in her left arm, and she cannot have any more surgeries as her skin is not strong enough and she would be at risk of an infection. Brianna is on a chemotherapy treatment in hopes to shrink some of her plexiform.
Now 22 years old, Brianna’s role as an ambassador for neurofibromatosis awareness began many years ago, at the age of eight, when she first began advocating for neurofibromatosis with the Children’s Tumor Foundation. She traveled with her mother to Washington DC, New York City, and Las Vegas to symposiums and forums to help others with neurofibromatosis and share her story.
In 2013, Brianna competed for and won the title of Miss Teen New York International with NF awareness and body positivity as her platform. She has always felt that those with NF are often put in a category of outcasts and she wanted to break that stereotype.
Before transferring to and graduating from Boston University, Brianna held NF Walks at her local community college. Brianna is an avid fundraiser, most recently at the Shine a Light NF Walk in Westchester, NY. Additionally, as a Patient Advocate, Brianna is using her voice and her story to contribute to all phases of the research process; already, Brianna has addressed the Food and Drug Administration (FDA) twice.
On Wednesday, November 20 at the Children’s Tumor Foundation National Gala in New York City, Brianna will be honored as the 2020 NF Ambassador. This award is bestowed upon an individual with NF to recognize their courage living with the disorder and their personal efforts to further the Foundation goals of research, public awareness, and patient support. We asked Brianna to tell us more about her journey.
How did you first learn about your diagnosis?
At birth my mom knew something was wrong. She noticed I had spots all over my body. She took me to my pediatrician, and he said they were just birthmarks. While she was giving me a bath she felt a lump on my left arm, and then one lump became two lumps. She took me back to my doctor, and he said “There is this disease called Von Recklinghausen’s disease, but it’s impossible because neither you nor your husband have it.”
My mother continued to fight and express that something was very wrong. I would not crawl, and I would cry whenever you laid me on my left side. They decided to x-ray my left arm, and what they saw was abnormal. My mom then took me to an orthopedic, where he diagnosed me. As soon as he took off my onesie and saw my “spots” he instantly knew. After a few blood tests we received the official diagnosis of NF1. I am a spontaneous mutation, meaning I am the first person in my family to have neurofibromatosis.
It’s always been a fight for my mom and me. Where I’m from, doctors don’t understand my disorder, so we have traveled to multiple states to find the best doctors for my disorder, that fit me best. Luckily, while we were traveling home from an early hospital that told me I would never be able to function normally or survive past the age of seven, a pilot on Angel flight told us about Boston Children’s Hospital. That’s where I’ve been receiving my treatments since I was two. Honestly, I don’t ever want to leave Boston Children’s. I truly enjoy being a patient there.
How does living with NF impact your life?
With neurofibromatosis every day is a gift and every day is a mystery. It can impact me negatively, but there are positive aspects, too, to this disorder. Yes, there are days when I can hardly get out of bed and I don’t want to see my friends because I don’t want them to see how much pain I’m in. But, I don’t think I would be who I am today if I didn’t have NF. I don’t even think my family would be as strong as they are today if I didn’t have NF.
This disorder has taught me to enjoy the little things in life, to be positive, and live my life to the best that I can. I want to help others, whether they have NF or a different disability. I want to save lives, I want to inspire, and while NF doesn’t define who I am, it has helped me be the strong person I am today.
What’s the most difficult obstacle you’ve faced? How did you overcome it?
I have dealt with many obstacles with NF. I had to learn how to walk again at 7 years old, when I was told I had a 25% chance of ever walking. I was hospital-bound for 3 months, and we had to celebrate my brothers’ 6th birthday party in the hospital. I felt so guilty. I wanted them to have a grand and happy birthday.
But what really broke my spirit and caused a great deal of depression was the second and third times I had cancer. When I was diagnosed with cancer again, of course I was scared. Deep down I knew it was back, but this time it felt different. I didn’t know how hard this journey would be after they removed the cancer. I thought it was going to be like the last time they removed the neurosarcoma, when I had one of the cancerous tumors removed from my throat my vocal cord was paralyzed. As soon as I woke up from my surgery it was hard to breathe, I could not talk, I felt like I swallowed knives. When I heard the sentence “You won’t be able to talk, eat normal, or sing…” my heart sank. I felt like I was drowning. This was the most difficult obstacle I have ever faced. Singing has been the only normalcy in my life and because of the paralysis, I wasn’t allowed to do the one thing I loved. I was on a liquid-based diet and I had to learn how to talk and swallow again. In a way I felt guilty that I was so depressed over not having my voice, or the ability to swallow normal.
NF has taken so much from me, and I felt like it was taking the only normal part of my life. I wasn’t going to let it win. I went through speech therapy, where I learned how to swallow again. It took about six months for me to learn how to swallow foods, and talk. While I have my voice now, my vocal cord has partial paralysis.
What’s the best piece of advice you’ve ever gotten?
The best piece of advice that I’ve ever gotten is a quote my mom has always said to me before every surgery, “It’s not brave if you’re not scared.” I forever stand by this. Going through surgery after surgery and living with NF is scary. But when you conquer something you’re scared of, it doesn’t make you a scaredy-cat, it makes you brave. Just because you’re afraid of something doesn’t mean you shouldn’t fight. Always continue to strive for your dreams or your goals. Never give up.
What does being a Patient Advocate mean to you?
Being a patient advocate is so important to me. It’s what I’ve done my whole life. My dream is to be a spokesperson where I can advocate for many people. I will do everything in my power to advocate for those in need. No one should feel alone. Everyone needs someone to talk to you that helps them feel uplifted.
How does art (photography, singing, writing, performing) help you cope?
I absolutely love performing. When I’m on stage I forget about all my troubles. What’s fun about acting is I get to be someone else. For a moment all my pain and all of the struggles I’ve gone through fades. Being on stage and the feeling you get while performing is so incredibly hard to explain. But it’s the best feeling in the whole world. Art has been such a big part of my life and I want to use it in my field of study or future careers.
What gives you hope?
What gives me hope is my family and their support. Without them I would not be able to succeed, they are my world. But, what also gives me hope is CTF and the NF community. Hearing them say that I’ve helped change lives helps me know that my goals of inspiring and advocating are coming true. We all need a little hope in our lives.
Congratulations on graduating from Boston University! What’s next?
Thank you! While on chemotherapy I wanted to focus on myself and the healing process. I’ve decided I want to get a master’s degree in drama therapy or theater arts. My goal is to use my psychology background to implement theater arts to help people cope with various disorders. Just like theater has helped me.
What were you thinking/how did you feel when you found out you were the 2020 NF Ambassador?
So many thoughts ran through my head when I found out I am the 2020 Ambassador. I am completely honored and forever thankful. I instantly thought of all the people I met along the way who has helped me get to where I am today. My goal is to be the best I can be, and inspire and help as many people as I can. With NF we each have our own journey and stories that can be scary. I know that firsthand. But, I don’t want people to see me just for having NF. I want them to see me as a bright person trying to make a difference and share positivity not only in the NF community, but the world.
