Video shows woman with rare condition that links her eyelid to her JAW
EXCLUSIVE: Weird video shows woman with rare condition that links her eyelid to her JAW – causing her eye to droop when she eats
- Mandy Bardisbanian suffers from the rare condition Marcus Gunn Phenomenon
- It causes her right eyelid to move upwards whenever she moves her jaw
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A California woman is one of only 300 people who suffer a rare condition that links her eyelid to her jaw – which causes her eye to droop when she eats.
Mandy Bardisbanian, 33, suffers from Marcus Gunn Phenomenon, a genetic disorder that means nerves and muscles of the jaw are linked to her left eyelid.
She said the condition has hurt her self-esteem, caused self-harm and also made her the target of bullies — but connections she formed with fellow sufferers on Facebook and TikTok helped her feel more comfortable sharing her issue.
Mandy Bardisbanian, 33, of Long Beach, California, suffers from Marcus Gunn Phenomenon, which causes her eyelid to move up-and-down when she moves her jaw
There are only 300 documented cases of the phenomena in the world, according to a report by the National Organization for Rare Disorders.
Ms Bardisbanian, of Long Beach, California, believes the disease is more common than the literature suggests and that there are about 24,000 cases.
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What exactly causes the issue has not yet been determined by experts. It is characterized by a person’s upper eyelid moving upwards when the jaw moves.
It received its name in the late 1800s, when a 15-year-old in England was examined by a UK doctor Marcus Gunn, and discovered the rare condition.
Ms Bardisbanian 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.
Ms Bardisbanian, who works as vice president at a merchandise licensing company, explained: ‘I think I became emo just so I would be able to cover my eye with my hair.
‘I was a highly 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.’
She took to social media to raise awareness about her condition after seeing a video falsely claiming her condition was caused by syphilis.
She posted a video that rebuked it and went viral, earning 172k views.
Mandy said: ‘I wasn’t going to sit there and stand people posting misinformation.
‘To the detriment of my mental health, it went viral.’
Now she has embarked on a campaign to seek out other people who suffer from the condition – to raise awareness and to reclaim her self-confidence.
While it initially caused her self-esteem issues, Ms Bardisbanian now runs a Facebook support group of over 2,000 members for her condition
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.
‘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,’ she said of the group.
‘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 apologized 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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