February 25, 2024

  • Lily Simon has NF1, a genetic condition that causes tumors to grow on her skin.
  • Her tumors are mostly harmless, but a stranger mistook them for monkey pox in a video posted on TikTok.
  • She posted a response to the video, explaining her situation and that she didn’t know she was being filmed.

One of Lilly Simon’s deepest concerns about her skin came true over the weekend when a stranger posted a video on TikTok implying that Simon had monkey pox.

Simon told Insider she was on her way to or from work one busy day this summer when a stranger filmed her from the other side of the train — without her knowledge or consent. She said she didn’t find out about the video until it went up on her sister’s feed on Sunday.

In the video, which has since been removed from TikTok, Simon sits on the train in a T-shirt and shorts. The small bumps are barely visible on her arms and legs, but the user captioned the video with a monkey emoji and a question mark, suggesting the spots could be monkey pox.

“It definitely felt like a pile of bricks to watch,” Simon said. “There were comments like, ‘Oh, she shouldn’t have been wearing shorts’ or ‘let’s jump her.’

Actually, Simon has neurofibromatosis type 1 or NF1 for short. The genetic condition causes small tumors to grow on her nerve endings, creating fleshy bumps above and below her skin. It affects about 1 in 3,000 people, making it one of the most common genetic disorders, according to Memorial Sloan Kettering Cancer Center.

While both NF1 and monkeypox cause bumps on the skin, Simon’s are soft and mostly superficial. Monkey pox, on the other hand, is characterized by painful, hard, or pus-filled lesions that eventually peel and fall off.

Simon told Insider that she didn’t expect her story to be discussed so publicly, but at the same time, she couldn’t let the video — and the ensuing bullying in the comments section — go unchecked. He posted a response video on TikTok Sunday and it now has more than a million views.

He has a genetic disease that causes mostly harmless tumors

Simon has managed the physical symptoms of NF1 for her entire life, as people are born with the genetic condition. NF1 is usually associated with freckles, brown spots, pea-sized lumps under the skin, and lumps in the iris of the eyes, according to Mayo Clinic.

Most of the tumors under her skin are benign, but doctors are keeping a close eye on Simon’s growths to make sure they don’t become cancerous or damage vital organs.

She said she has had multiple surgeries to manage her condition, including biopsies and more extensive laser treatments to remove hundreds of tumors at a time. However, living with visible tumors on her skin has also taken a toll on Simon’s mental health, she explained to video.

“I know I have these volumes, but I’ve worked really hard on this body and I love wearing shorts, t-shirts and tank tops,” she told Insider. “It took a long time to get comfortable wearing these things.”

She said she has suffered plenty of bullying over the years and expected her tumors might be perceived differently in the context of the ongoing monkeypox emergency. However, she didn’t expect her likeness to be shared online or receive an outpouring of support after her response to the video.

“I didn’t open my phone until later that day and that’s when I saw it really went viral,” she said. “I saw that I actually had people to support me and support me. And then I had other people who have neurofibromatosis reaching out to me like, this is my worst fear, good for you guys standing up.”

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