She is beautiful no matter what they say.
Lauren Behanna, 27, is keeping her confidence and spreading awareness about her extremely rare condition — despite rude comments from online trolls.
The content creator and TikTok star lives in West Virginia with her husband, Cody, and their 7-year-old daughter, Abby, who both constantly remind her that she is beautiful.
Behanna was born with congenital myasthenic syndrome — which she describes as “a muscle weakness condition that is like multiple sclerosis – but the weakness doesn’t happen gradually.” As a baby, Behanna spent her first year fighting for her life in the hospital, but she reportedly wasn’t expected to live past her first birthday.
The condition has elongated her face — which online trolls are quick to poke fun at, comparing her to the twin characters from “How To Train Your Dragon,” as well as Fuchi, an anime monster and Eddie Munson from “Stranger Things.”
“Everyone does stare, but I don’t pay attention to them,” she admitted. “Instead of running from the obvious, I chose to educate others about my condition.”
After nearly three decades, Behanna is using every second of her life to entertain and encourage others. She has even gone viral on TikTok, where she has 757,400 followers and shares clips in which she candidly answers questions, takes requests for personalized songs from her fans and sings her heart out.
Unfortunately, Behanna’s comments section does get flooded with online trolls teasing her for her appearance and singing voice. But she noted that most people in real life treat her “just like anybody else.”
“I don’t recall much bullying as a child, and it’s honestly more on TikTok as an adult – but I can handle it,” she said.
Offline, though, she still faces other difficulties in day-to-day life as well.
She’s been taking two medications since she was 4 years old and credits them for helping give her an “amazing” quality of life, one lived much longer than doctors anticipated.
“Without them, I’m basically dead,” she told NeedToKnow.Online. “Without my medication, I’m basically a rag doll – unable to move and barely able to breathe.”
Behanna added that she spends the first 30 minutes of every day gaining the strength to get out of bed and has to re-teach herself how to walk every day. She uses a wheelchair for long distances.
“It sucks, as every day is different, but I’m so used to it now,” she said.
Behanna doesn’t hide away from the public, though she also noted that she appreciates being a homebody. “I do mainly enjoy staying inside, so my social life isn’t much to brag about,” she said.
But when she does leave the house, she often is remembered due to her TikTok fame.
“I can’t even go to the store without someone recognizing me – I love it,” Behanna said.
While she may experience more hate and physical challenges in her daily life, Behanna is grateful for every second of her life.
“I’ve accepted the fact I’m different and I love being able to show others it’s OK to be different,” Behanna said. “Either way, I hope to live a long, healthy and happy life, where I continue to entertain and inspire people.”
