The video shows a woman with a rare condition that connects her eyelids to her jaw
A California woman is one of only 300 people with a rare condition that connects her eyelids to her jaw – causing her eyes to droop when she eats.
Mandy Bardisbanian, 33, suffers from Marcus Gunn Phenomenon, a genetic condition which means the nerves and muscles of the jaw are connected to her left eyelid.
She said the condition damaged her self-esteem, caused her to self-harm and also made her a target for bullies – but she has made connections with other sufferers Facebook and TikTok helped her feel more comfortable sharing her problem.
Mandy Bardisbanian, 33, of Long Beach, California, suffers from the Marcus Gunn phenomenon, which causes her eyelids to move up and down when she moves her jaw
According to a report by the National Organization for Rare Diseases, there are only 300 documented cases of this phenomenon in the world.
Ms. Bardisbanian, of Long Beach, California, believes the disease is more common than the literature suggests, and that there are about 24,000 cases.
Experts have not yet determined what exactly causes the problem. It is characterized by the fact that the upper eyelid of a person moves upwards when the jaw moves.
It got its name in the late 1800s, when a 15-year-old boy in England was examined by British doctor Marcus Gunn and discovered a rare disease.
Ms. Bardisbanyan used to be very insecure about her condition, but now she fully accepts it.
She suffered from this condition all her life and was bullied for it as a child, and now she wants to create a community with people like her.
Ms Bardisbanian, who works as a vice president at a merchandise licensing company, explained: “I think I became emo just so I could cover my eyes with hair.
“I was a kid who was bullied a lot, whatever you think of when you think of the shortest, dumbest kid, that was me.
“It was incredibly difficult for me because the kids were mean. I self-harmed as a child, it was incredibly difficult to grow up with these things.
“Even though it’s not the worst thing you can have, it sucks, it’s okay if it sucks.”
She took to social media to raise awareness of her condition after seeing a video falsely claiming her condition was caused by syphilis.
She posted a video rebuking it and it went viral, garnering 172,000 views.
Mandy said: “I wasn’t going to sit back and let people post misinformation.
“To the detriment of my mental health, it went viral.”
Now she has launched a campaign to find other people with the condition – to raise awareness and regain her confidence.
Although it initially caused her self-esteem issues, Ms Bardisbanian now runs a Facebook support group with more than 2,000 members for her condition
She shares videos related to her condition and has created a Facebook group for people who suffer from the Marcus Gunn phenomenon.
Now the group has more than 2000 members.
“From now on I decided to find more people with Marcus Gunn, I started a Facebook group to find other people like me,” she said of the group.
“It’s also a way for me to take back my power, now I want to start an anti-bullying charity.”
She continued: “I’ve had people come to me and say they have it and they hate it, but my videos give them hope.
“There was even a girl from my gymnasium who turned to me and apologized for how badly she treated me at school.
“The hardest thing is always hitting the service because I’m revealing something I’ve been trying to hide all my life.”