A former Miss Teen New York from the Hudson Valley with a rare genetic disorder was honored by the Children's Tumor Foundation.

Last month, Brianna Worden, 22, of Sullivan County was named a 2020 NF Ambassador at the Children’s Tumor Foundation National Gala in New York City. The award is given to someone with NF (neurofibromatosis) to recognize their courage living with the disorder and their personal efforts to further the foundation's goals of research, public awareness, and patient support.

Worden was diagnosed with neurofibromatosis type 1 when she was two months old. According to the Children's Tumor Foundation, she has a plexiform fibroma that encompasses her entire left side, renal artery stenosis and hypertension, bone disfigurements, chronic pain and fatigue, learning disabilities, scoliosis. She has also had over 10 surgeries, including three spinal fusions, a wrist stabilization, and three tumor debulking to her left arm where, each time, three pounds of tumor was removed.

She was diagnosed with cancer as a freshman in high school. Cancer returned two more times after that. One time, her vocal cord was paralyzed for six months after cancerous tumors removed from her throat.

As of now she no longer has a malignant neurosarcoma, officials say. However, her doctors believe she may have thyroid cancer. 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 infection.

At the age of 8, she began advocating for neurofibromatosis with the Children’s Tumor Foundation. In 2013, she was named Miss Teen New York International with NF awareness and body positivity as her platform.

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