Woman with rare jaw-winking syndrome ‘became an emo’ to hide condition
Mandy Bardisbanian, 33, is one of only 300 people in the world with Marcus Gunn jaw-winking syndrome
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Your support makes all the difference.A woman has an extremely rare condition that links her eyelids to her jaw, which causes her eyes to droop when she opens and closes her mouth.
Mandy Bardisbanian, 33, is one of only 300 people in the world with Marcus Gunn Jaw-winking syndrome - which has caused her to be bullied and self-harm.
The rare genetic disorder means nerves and muscles of the jaw are linked to the eyelid.
One of her eyelids will droop and open when she moves her mouth.
A video shows Mandy’s eye opening and closing as she’s eating food.
There are only 300 documented cases in the world, according to a 2008 report - the most up-to-date information provided by the National Organization for Rare Disorders.
Mandy believes the disease is more common than the literature suggests and that there are about 24,000 cases.
Mandy, a VP at a merchandise licensing company, used to be very insecure about her condition but has now embraced it fully.
She has suffered from the condition her whole life and was bullied for it as a child and now wants to create a community with others like her.
Mandy said: “I think I became emo just so I would be able to cover my eye with my hair.
“I was an extremely bullied child, whatever you think of when you picture the lowest, dorkiest kid, that was me.
“It was incredibly hard for me because kids were mean. I self-harmed as a kid, it was incredibly hard to grow up with a thing like that.
“Even though it’s not the worst thing you can have, it sucked. It’s OK for it to suck.”
Mandy took to social media to raise awareness about her condition after seeing a video that stated that Marcus Gunn Phenomenon was caused by syphilis.
She posted a video rebuking this and it immediately went viral, gaining 172k views.
Mandy added: “I wasn’t going to sit there and stand people posting misinformation.
“To the detriment of my mental health, it went viral.”
Now Mandy has embarked on a campaign to seek out other people who suffer from the condition - to raise awareness and to reclaim her self-confidence.
She shares videos relating to her condition and has started a Facebook group for people suffering with Marcus Gunn Phenomenon.
The group now has over 2,000 members.
Mandy, who lives in Long Beach, California, USA, explained: “From there I decided I was going to find more people with Marcus Gunn, I created a Facebook group to find other people like me.
“It’s also a way for me to reclaim my power, now I want to start an anti-bullying charity.”
She continued: “There have been people reaching out to me and saying that they have this and they hate it, but that my videos give them hope.
“There was even a girl from my high school who reached out to me and apologised for how mean she was to me in school.
“The hardest part is always hitting post, because I’m exposing something about myself that I’ve tried to hide for my whole life.”
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