A California woman is one of only 300 people with a rare condition in which her eyelid is attached to her jaw, causing her eye to droop when she eats.
Mandy Bardisbanian, 33, suffers from Marcus Gunn phenomenon, a genetic condition in which nerves and jaw muscles are connected to her left eyelid.
She said the condition damaged her self-esteem, caused self-harm and also made her a target for bullying – but the connections she forged with peers on Facebook and TikTok helped her feel more comfortable sharing her problem.
Mandy Bardisbanian, 33, of Long Beach, California, suffers from the Marcus Gunn phenomenon, where her eyelid twitches when she moves her jaw
According to a report by the National Organization for Rare Disorders, there are only 300 documented cases of this phenomenon worldwide.
Ms Bardisbanian, of Long Beach, California, believes the disease is more common than the literature suggests, with about 24,000 cases.
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What exactly causes the problem has not yet been determined by experts. It is characterized by a person’s upper eyelid moving up when the jaw moves.
It got its name at the end of the 19th century when a 15-year-old boy in England was examined by the British doctor Marcus Gunn and discovered the rare disease.
Ms Bardisbanian used to be very insecure about her condition but has now fully embraced it.
She has suffered from the disease all her life and was bullied for it as a child and now wants to start a community with others like her.
Ms Bardisbanian, who works as a vice president at a trade licensing company, explained: “I think I became emo because I covered my eyes with my hair.
“I was a very bullied kid, whatever you think of when you imagine the lowest, meanest kid, that was me.
“It was incredibly difficult for me, because children were mean. I hurt myself as a child, it was incredibly difficult to grow up with something like that.
“Even if it’s not the worst thing, it sucked, it’s okay that it sucked.”
She raised social media awareness of her condition after seeing a video falsely claiming her condition was caused by syphilis.
She posted a video slamming it, which went viral and garnered 172,000 views.
Mandy said: ‘I wasn’t going to sit there and let people post wrong information.
“It went viral at the expense of my mental health.”
Now she has launched a campaign to reach out to other people suffering from the disease – to raise awareness and regain their confidence.
Although it initially caused her self-esteem problems, Ms Bardisbanian now runs a Facebook support group for her illness with more than 2,000 members
She shares videos about her condition and started a Facebook group for people who suffer from the Marcus Gunn phenomenon.
The group now has more than 2,000 members.
“From there I decided I would get more people with Marcus Gunn. I created a Facebook group to find other people like me,” she said of the group.
“It is also a way for me to regain my strength. Now I want to start an anti-bullying charity.”
She continued, “There are people who come to me and say they have it and hate it, but my videos give them hope.
“There was even a girl from my high school who contacted me and apologized for how mean she was to me at school.
“The hardest part is always posting because I’m revealing something about myself that I’ve been trying to hide my whole life.”
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
