A mum-of-one who describes herself like a “rag doll” has shared insight into her daily life with an extremely rare condition – including the harsh comments she receives from people.
Lauren Behanna, a content creator from West Virgina, US, lives with her husband, Cody, and their daughter, seven-year-old Abby, and has recently gone viral talking about her congenital myasthenic syndrome.
In a clip that has racked up over 13.5 million views, the 27-year-old shows herself using a TikTok filter which ‘makes you beautiful’, but it backfires and calls her too ugly.
The condition has also given her an “elongated” face, which often sees Lauren become a victim of trolling online.
But she is pushing back against evil social media users and is determined to use her platform to raise awareness of her illness, with 708,000 dedicated followers (@itslaurenduh94).
“I was born with a muscle weakness condition that is like multiple sclerosis – but the weakness doesn’t happen gradually,” Lauren told NeedToKnow.Online.
“I spent the first year of my life mainly in hospital as I would quit breathing a lot.
“Without my medication, I’m basically a rag doll – unable to move and barely able to breathe.
“I have to teach myself how to walk again each and every day.
“When I wake up, I can’t get out of bed and I have to wait at least 30 minutes before I can get up.
“It sucks, as every day is different, but I’m so used to it now.
“I also have an elongated face, which means I look different to most people.
“But instead of running from the obvious, I chose to educate others about my condition.”
Evil trolls compare Lauren to the twin characters from How To Train Your Dragon, as well as Fuchi, an Anime monster and Eddie Munson from Stranger things.
Lauren, whose parents were told she wouldn’t survive past her first birthday, takes no heed of the comments but is merely grateful to be alive and be able to share her story to help others.
She said: “It’s absolutely amazing the quality of life I have, all thanks to medication.
“I’ve been on two types which work together since I was four years old and without them, I’m basically dead.
“Everyone does stare, but I don’t pay attention to them.
“I don’t recall much bullying as a child and it’s honestly more on TikTok as an adult – but I can handle it.
“Emotionally, it’s been hard as I often wonder ‘why me?’ but I allowed myself time to cry and let any feelings out.
“Don’t let anyone ever tell you your feelings aren’t valid, as they are and you matter, especially how you feel.”
For Lauren, she receives support from her daughter, Abby, who she claims “doesn’t notice” her mum’s differences and treats her like any other child would do.
She said: “Abby’s never said anything and honestly, people treat me as I’m just like anybody else.
“I’ve never really noticed anything different and it’s more so about my muscle weakness than my face.
“I do mainly enjoy staying inside, so my social life isn’t much to brag about.
“Either way, I hope to live a long, healthy and happy life, where I continue to entertain and inspire people. “I’m a pretty down-to-earth woman, who loves to make people smile.
“I’ve accepted the fact I’m different and I love being able to show others it’s okay to be different.
“It’s what makes us all unique.”
Many fans have come out to support the mum online too, telling her she is “beautiful” and “pretty” – while also telling off those who say otherwise.
Lauren has been left very surprised by her TikTok fame but says she is constantly recognised in her local neighbourhood, and she loves it.
She added: “I downloaded [the app] out of pure boredom and I haven’t had anything really crazy happen yet, but I can’t even go to the store without someone recognising me – I love it.
“I love being able to meet the people that I entertain and I always encourage those to come and say hi.
“I do use a wheelchair for long distance, so [a lot] of the time, when people do see me, I’m in my chair – but I am approachable, I promise.”
