TikToker, 16, with Agonizing Skin Disorder That Causes Blisters and Tearing Shares 'Get Ready With Me' Videos (Exclusive)
Lily, 16, has Epidermolysis Bullosa, a rare and painful childhood skin disorder that makes her "look different," she tells PEOPLE
@grwmwithlily8/TikTok
TikToker grwmwithlily8.When TikToker Lily — @grwmwithlily8 — posted her very first video, it quickly went viral, racking up more than 650,000 views in two weeks.
The 16-year-old tells PEOPLE she had been getting "more into makeup and skincare recently, I thought it would be fun to film getting ready."
But before she actually uploaded the video to TikTok, she says, "I was nervous."
The reason: “I look different,” the Boulder County, Colo., native tells PEOPLE exclusively.
Lily has Epidermolysis Bullosa, a rare genetic condition in which “layers of the skin do not bind normally, making it easy for the skin to tear and blister," according to the National Institute of Health.
Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from juicy celebrity news to compelling human interest stories.
As Lily explains, “our skin is like Velcro and collagen is [the] latches. I am, however, missing those latches. I don't produce collagen VII. which just means I blister and tear a lot easier than everyone else, and it actually affects the inside, too.”
The skin is so fragile, the disorder is commonly known as "butterfly skin disease," after the delicate wings of butterflies. “I can't scratch basically at all, ‘cause that immediately forms a wound or a blister," Lily says. "I'm terrified of crowds because I know if I get hit once, I immediately get a wound.”
She’s so prone to injury that she estimates 70% of her body is covered in wounds.
“The pain never goes away, which just shows you just how strong she really is doing these videos,” her mom, Jackie, tells PEOPLE.
It’s what makes everyday activities — like taking a bath — painful.
"A lot of people have said to me like, 'Oh you're taking a bath tonight. That's great. You get to relax,'" she says. "I always look at them like, they're crazy: It's like when you scrape your knee or something and have to clean it off, it feels like that. But all over my body."
Also due to her condition — "I constantly got open wounds and they just healed together" — her fingers fused by the time she was four years old, which can make it difficult to hold objects.
In her videos, she props her phone up to film — but she's also learned to grip the sides of her makeup and skincare products between the knuckles of her pointer fingers and thumbs. She holds bigger products, like foundation, between both hands.
But it's that tendency for her wounds to "heal together," that requires Lily to undergo regular surgery to keep her esophagus open.
"Basically every two months it, it closes," Lily tells PEOPLE. "It gets tighter, basically."
“I can best describe [it] as a balloon [and they] blow it up to stretch [my esophagus],” she says, calling the procedure, esophageal dilation, “definitely annoying.”
While Lily is always happy to answer questions about her disability, what she most enjoys is posting "Get Ready With Me" videos — including her latest series, in which she creates themed looks based on different songs from her favorite artist, Taylor Swift.
“It would be so cool if Taylor Swift could just see one of the videos,” she said.
And as for the people who’ve seen her videos already — millions of them — Lily has received positive comments from fans. "'They said that seeing me going through my daily struggles helped them go through theirs too," she says.
Since setting up a P.O Box, care packages have been coming in — including one from famed beauty influencer Mikayla Nogueira, who sent the teen, who sent a package full of makeup products and whose videos helped inspire Lily to start her own makeup and skincare account.
“It's really a really special response that we never ever expected,” Jackie tells PEOPLE. “We're really happy that people are realizing how amazing our kid is.”
For more People news, make sure to sign up for our newsletter!
Read the original article on People.
