For NF Awareness Month this May, nonprofit organization the Children’s Tumor Foundation is launching a new campaign aimed at neurofibromatosis (NF).
This rare disorder, also known as schwannomatosis, is a genetic condition that causes tumors to grow on nerves throughout the body and can manifest differently from patient to patient, making diagnosis difficult.
Sometimes it can be highly visual, showing as dozens and sometimes hundreds of lumps on a patient’s skin, while other times it can be internal and thus harder to see how it impacts each patient.
The foundation said in a press release that with its new campaign, it wants to help “patients with visible signs of NF struggle to be seen as more than just their NF, while patients whose NF is internal, or 'invisible,' struggle to make others understand.”
It will do this through various media, including storytelling, photography and “intimate first-person videos,” according to the release, which it hopes will also boost awareness and diagnosis of NF.
The video includes a YouTube clip of real patients, mostly younger adults and children, talking about the different ways NF can manifest. They're all sporting a “Born a Fighter” shirt. One woman featured in the video says she has more than 100 tumors on the inside but looks normal on the outside, bringing home the "Make NF Visible" line.
“The more we learn about NF, the more important it is to focus on the people who live with the disease, and give them a platform to tell their story about how NF affects their life, in all the visible and nonvisible ways,” said Simon Vukelj, chief marketing officer of the Children's Tumor Foundation, in the release.
“This May and all year round, we're honored to bring these real-life NF stories to the forefront, both so that NF patients receive the care and treatments they deserve, while also inspiring those who are fighting for someone important in their lives.”