Standing in front of a bunch of strangers wearing only a bikini isn’t easy for anyone, but for 22-year old beauty pageant winner Victoria Graham, it’s especially difficult.

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"It's not easy to stand on stage in a bikini in pageants. I have a 25-inch scar that runs down my spine,” Graham tells the BBC. "And people can see it... like, really see it."

The Maryland resident has a rare genetic condition affecting the connective tissue known as Ehlers-Danlos Syndromes (EDS), and her scar is a result of numerous operations to treat the disorder. The syndromes include 13 different types of disorders that cause joints and skin to stretch further than normal as well as tissue to be extra fragile.

So what exactly is the disorder? According to, it is basically when a person’s collagen isn’t structured the way it should be, causing the tissue that relies on it for support to be pulled beyond normal limits and damaged. Common symptoms include loose joints prone to dislocation; joint pain; skin that tears or bruises easily and heals slowly; poor muscle tone; and musculoskeletal pain, among others. While not curable, it is treatable and requires physical evaluation and testing at the doctor’s office.

Graham first realized something wasn’t right when her gymnastics coaches growing up told her she was too flexible.

"I'd get injuries that weren't normal - things weren't adding up," she says to the BBC.

At 13, she finally received a proper diagnosis and discovered that her mother and grandmother also had the inheritable disorder, without ever knowing it.

BBC writes that from 2014-2016, Graham had 10 operations on her brain and spine.

"I'm fused from skull to my bum - all the way down," she says. "Because I was able to move so much before, the vertebrae were dislocating themselves.

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She explains to the paper that she has a limited range of motion since she needs to remain stiff in order to ensure her brain stem isn’t under pressure. About 20-25 pills every couple of hours are needed to maintain functionality, the media outlet reports.

Now, Graham holds the Miss Frostburg title, for Frostburg Maryland, and runs a non-profit EDS support group.

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