A video
posted of a Brooklyn woman on TikTok mocks her appearance and alleges that she
has monkeypox. But Lilly Simon actually lives with a completely different chronic condition.
Simon
spent last Sunday crafting a response to a video somebody else took of her on
the train while a bystander was recording her, and later posted on TikTok
to suggest she had the virus.
"The rest of the comments were, ‘We have
to get out of the city, monkeypox, she's dirty, why's she on the train?’"
Simon said.
She lives with neurofibromatosis type 1 which
creates benign tumors beneath the skin.
The condition is caused by mutations in the nf1
gene, meaning it's not contagious.
Jameela J. Yusuff, Chief Medical Officer of
University Hospital at Downstate explains that the disease is not like
monkeypox at all.
"It does not predispose anyone to any type of
infection and even with monkeypox the lesions are not always on the
face, not always as visible. And monkeypox lesions tend to be more
tender."
The original video posted of Simon has since
been deleted and the account can't be found.
"I never could predict this kind of outcome,
this kind of support," Simon said.
Though, as Simon puts it, this experience
reminds her of the days she couldn't defend herself against bullies. But she
says now is a time where she can stand up for all.
"The adult you are is who you would have felt
safe with as a kid and that kind of hits hard. And I kind of wish I did know
someone who would have done what I did,” Simon said.