• 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 monkeypox in a video posted to TikTok.
  • She posted a response to the video, explaining her condition and that she didn't know she was being filmed.

One of Lilly Simon's deepest anxieties about her skin became a reality over the weekend, when a stranger posted a video to TikTok that implied that Simon had monkeypox.

Simon told Insider that she was commuting to or from work on a sweltering day this summer when a stranger filmed her from across the train — without her knowledge or consent. She said she didn't find out about the video until it came up in 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. Small bumps are just barely visible on her arms and legs, but the user captioned the video with a monkey emoji and a question mark, implying that the spots might be monkeypox.

"It definitely felt like a ton of bricks to watch," Simon said. "There were comments like, 'Oh, she shouldn't be wearing shorts,' or 'let's jump her.'"

In reality, Simon has neurofibromatosis type 1, or NF1 for short. The genetic condition causes small tumors to grow at the ends of her nerves, creating fleshy bumps on and underneath 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 to appear on the skin, the ones that Simon has are soft and mostly superficial. Monkeypox, on the other hand, is characterized by painful, hard, or pus-filled lesions that eventually scab and fall off.

Simon told Insider that she wasn't expecting to have her story discussed so publicly, but at the same time, she couldn't let the video — and the bullying that ensued in the comments section — go unchecked. She posted a response video on TikTok Sunday, and it's now gotten more than a million views.

She has a genetic disease that causes mostly harmless tumors

Simon has managed the physical symptoms of NF1 for her whole life, as people are born with the genetic condition. NF1 is typically associated with patches of freckling, cafe au lait spots, pea-sized bumps under the skin, and bumps on the iris of the eyes, according to Mayo Clinic.

Most of the tumors under her skin are benign, but doctors have kept a close eye on Simon's growths to make sure they do not become cancerous or damage vital organs.

She said she's had several surgeries to manage her condition, including biopsies and more extensive laser treatments to remove hundreds of tumors at a time. Still, living with visible tumors on her skin has also impacted Simon's mental health, she explained in the video.

@lillysmallsz #stitch with @fuckinfrass i have taken screen shots of the comments will be posting them…everyywhereee. For those of you who were kind thank u. Youre fine. When someone does a background search/google search on yall… theyll see who you really are.do you talk to your colleagues like this? Your patrons?#nf1warrior💚💙 #nf1awareness #nf1fighter #bodyshaming #bodypositivity #streetharrassment ♬ Oh No - Kreepa


"I know that I have these tumors, but I worked really hard for this body and I love wearing shorts and T-shirts and tank tops," she told Insider. "It took a long time for me to get comfortable wearing that stuff."

She said she's endured plenty of bullying over the years, and she expected that her tumors might be perceived differently in the context of the ongoing monkeypox emergency. However, she did not expect to have her likeness shared on the internet, or that she would receive an outpouring of support following her response to the video.

"I didn't turn my phone on until later that day, and that's when I saw that it was really going viral," she said. "I saw that I really had people backing me up and supporting me. And then I had other people who have neurofibromatosis reaching out like, this is my worst fear, good for you for standing up."

Read the original article on Insider