Mother, 27, born with a rare muscle condition that left her with facial deformities hits back at ‘evil trolls’ who call her a ‘MONSTER’ – insisting she ‘loves showing others it’s okay to be different’
- Lauren Behanna, 27, from West Virginia, suffers from congenital myasthenic syndrome, a genetic disorder that causes muscle weakness
- Due to the condition, Lauren said she feels like a ‘rag doll’ and can barely move, leaving her wheelchair ridden. It has also given her an ‘elongated’ face
- Lauren said she is often subjected to vicious online trolling because of her differences, with some nasty commenters comparing her to a ‘monster’
- But Lauren, who is now a viral TikTok star, is pushing back against her haters, and is determined to use her platform to raise awareness on her illness
- She said people often ‘stare’ at her in public, but insisted she is unbothered by the looks and the online negativity, adding, ‘I don’t pay attention. I can handle it’
- She said medicine has helped improve her ‘quality of life’ immensely. In addition, she has the support of her husband, Cody, and seven-year-old daughter, Abby
A mother-of-one who was born with a rare muscle condition, which caused facial deformities and left her feeling as weak as a ‘rag doll,’ has opened up about what it’s like to deal with hateful comments from ‘evil trolls’ who say she looks like a ‘monster.’
Lauren Behanna, 27, a content creator from West Virginia, has recently gone viral on TikTok for speaking out about what it’s really like to live with congenital myasthenic syndrome, a genetic disorder that causes muscle weakness and makes it so that she can barely move.
Lauren said she has to ‘teach herself how to walk again each and every day,’ and has to spend 30 minutes building up her strength before getting out of bed in the morning.
A mother-of-one who was born with a rare muscle condition which caused facial deformities has opened up about what it’s like to deal with ‘evil trolls’ who say she looks like a ‘monster’
Opening up: Lauren Behanna, 27, from West Virginia, spoke out about what it’s really like to live with congenital myasthenic syndrome, a genetic disorder that causes muscle weakness
Stay strong: Lauren said she has to ‘teach herself how to walk again each and every day,’ and has to spend 30 minutes building up her strength before getting out of bed in the morning
The condition has also given her an ‘elongated’ face, which often sees Lauren subjected to vicious online trolling. She is pictured with her daughter
The condition has also given her an ‘elongated’ face, which often sees Lauren subjected to vicious online trolling.
What is congenital myasthenic syndrome?
- Congenital myasthenic syndrome is a genetic disorder caused by problems in the communication between nerve cells and muscles
- Symptoms usually appear in the first few years of childhood, and include failure to meet developmental milestones, such as rolling over or sitting up, pauses in breathing or trouble swallowing, and droopy eyelids
- With myasthenic, weakness usually worsens during continuous activity, and strength returns partially after resting
- Medicine can improve the signaling between nerve cell and muscle, but there are no cures to the underlying genetic abnormality
- Source: Ninds.Nih.Gov
But she is pushing back against nasty social media users, and is determined to use her platform – she has more than 708,000 dedicated followers on TikTok – to raise awareness on her illness.
‘I was born with a muscle weakness condition that is like multiple sclerosis – but the weakness doesn’t happen gradually,’ Lauren told NeedToKnow.Online recently.
‘I spent the first year of my life mainly in hospitals 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.’
Some nasty commenters have compared Lauren to the twin characters from How To Train Your Dragon, Fuchi, an Anime monster, and Eddie Munson from Stranger things.
However, 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 to be able to share her story to help others.
She continued: ‘I 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.’
‘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.
Awful: Some nasty commenters have compared Lauren to the twins from How To Train Your Dragon, Fuchi (left), an Anime monster, and Eddie Munson (right) from Stranger things
But Lauren is pushing back against nasty social media users, and is determined to use her platform – she has more than 708,000 dedicated followers on TikTok – to raise awareness
Lauren (seen as a kid), whose parents were told she wouldn’t survive past her first birthday, takes no heed of the comments, and is grateful to be alive and to be able to share her story
‘Without my medication, I’m basically a rag doll – unable to move and barely able to breathe,’ Lauren said. ‘I have to teach myself how to walk again each and every day’
Stronger than ever: She said people often ‘stare’ at her in public, but insisted that she is unbothered by the looks and the online hate, adding, ‘I don’t pay attention. 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.
‘Instead of running from the obvious, I chose to educate others about my condition,’ said Lauren
‘Don’t let anyone ever tell you your feelings aren’t valid, as they are and you matter, especially how you feel.’
Lauren receives support from her husband, Cody, and seven-year-old daughter, Abby – who she said ‘doesn’t notice’ her mom’s differences and treats her like any other child would do.
‘Abby’s never said anything and honestly, people [in my life] treat me as I’m just like anybody else,’ she explained.
‘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.’
According to the 27-year-old, medicine has helped improve her ‘quality of life’ immensely. She said: ‘It’s absolutely amazing the quality of life I have, all thanks to medication.
Lauren receives support from her husband, Cody, and seven-year-old daughter, Abby – who she said ‘doesn’t notice’ her mom’s differences and treats her like any other child would do
‘Abby’s never said anything and honestly, people [in my life] treat me as I’m just like anybody else,’ she explained
According to the 27-year-old, medicine has helped improve her ‘quality of life’ immensely. She said: ‘Without [the medicine], I’m basically dead’
‘I hope to live a long, healthy and happy life, where I continue to entertain and inspire people,’ Lauren (seen with her husband) added
‘I’ve been on two types which work together since I was four years old and without them, I’m basically dead.
‘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.’
In one viral video, which has racked up over 13.5 million views, the mother-of-one attempted to use a TikTok filter that is supposed to ‘make you beautiful.’
However, the filter backfired and it didn’t work, with Lauren joking that she was ‘too ugly’ to use it.
‘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,’ she told NeedToKnow
In one viral video, the mother-of-one attempted to use a TikTok filter that is supposed to ‘make you beautiful.’ But it didn’t work, and Lauren joked that she was ‘too ugly’ to use it
And while she has gotten a lot of nasty comments, many people have also come out to support the mom online too, telling her that she is ‘beautiful’ and ‘pretty’
Lauren has been left very surprised by her TikTok fame. She said she is constantly recognized in her local neighborhood due to it – and she loves it
‘I love being able to meet the people that I entertain and I always encourage those to come and say hi,’ she concluded
And while she has gotten a lot of nasty comments, many people have also come out to support the mom online too, telling her that she is ‘beautiful’ and ‘pretty’ – while also clapping back at those who say otherwise.
Lauren has been left very surprised by her TikTok fame. She said she is constantly recognized in her local neighborhood due to it – 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 recognizing 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.’
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