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Teen with rare and painful skin disorder gets huge support on internet for sharing makeup tutorials

The 16-year-old has been battling an agonizing skin disorder since childhood but she doesn't let it stop her from posting inspiring videos on TikTok.

Teen with rare and painful skin disorder gets huge support on internet for sharing makeup tutorials
Cover Image Source: TikTok | @grwmwithlily8

It takes a lot of courage to face the camera and show your raw and unfiltered self to the world. You have to brace yourself for negative criticism and be welcoming towards compliments as well. 16-year-old Lily, who goes by @grwmwithlily8 on TikTok, didn't expect to go viral on the internet overnight after posting her first video. But her video happens to be a special one amongst countless 'Get Ready With Me' videos which are posted by fellow creators on various platforms.

Image Source: TikTok | @grwmwithlily8
Image Source: TikTok | @grwmwithlily8

Lily has been suffering from a rare genetic condition called Epidermolysis Bullosa where her skin does not bind normally and they easily get tears and blisters, per the National Institute of Health. The condition, which is also called EB in short, has caused Lily to look a lot different than other girls her age. In an exclusive interview with PEOPLE, the teen shared what it is like to find unexpected fame on TikTok and how she lives with her condition.

"I've been getting more into makeup and skincare recently and I thought it would be fun to film getting ready," she told the outlet. Lily admitted that she was nervous before uploading her first video which went viral with over 650,000 views and gained her over 300,000 subscribers in a short period of time. "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," Lily explained about her rare ailment.

Image Source: TikTok | @grwmwithlily8
Image Source: TikTok | @grwmwithlily8

"I can't scratch basically at all, ‘cause that immediately forms a wound or a blister'," Lily said. "I'm terrified of crowds because I know if I get hit once, I immediately get a wound." The teen estimates that 70% of her body is currently covered in wounds and she is in constant pain. "The pain never goes away, which just shows you just how strong she really is doing these videos," her mom, Jackie, told the outlet.

Regular activities like bathing are painful for her as well. "A lot of people have said to me like, 'Oh you're taking a bath tonight. That's great. You get to relax.' 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. I constantly got open wounds and they just healed together," Lily continued. Due to her condition, her fingers fused together by the time she was 4 years old and that makes it difficult for her to hold anything.

Image Source: TikTok | @grwmwithlily8
Image Source: TikTok | @grwmwithlily8

But Lily has not given up filming herself after her first viral video. She continues to talk about her EB in several follow-up videos to raise awareness. The teen often shows up on TikTok, holding her makeup and skincare products between the knuckles of her pointer fingers and thumb as she films her "Get Ready With Me" videos and chats with her viewers. She also answers respectful questions left by the TikTok crowd who are curious about her agonizing ailment.




Lily's condition also affects her esophagus which gets narrower every two months and she requires routine surgeries to keep it open. “I can best describe it as a balloon and they blow it up to stretch my esophagus,” she said, calling the procedure, esophageal dilation," Lily further explained. She also shares how her favorite artist is Taylor Swift and she even posts various makeup looks inspired by different songs of Swift.


“It would be so cool if Taylor Swift could just see one of the videos,” she wishes. Lily adds that watching her go through daily struggles has helped many go through their own struggles as well. After setting up a P.O. Box, she has continued receiving numerous gifts from her audience and even care packages, one of which came from famed beauty influencer Mikayla Nogueira. Nogueira sent Lily a box full of makeup products as she has served as an inspiration for the teen to start her own account. Jackie is really happy for all the love her daughter is getting lately and Lily continues to inspire people with her videos.

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