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Miss Maryland contestant using pageants to spread awareness about Ehlers-Danlos Syndrome

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Posted at 11:26 PM, May 23, 2017
and last updated 2018-12-28 10:22:44-05

"And Miss Frostburg 2017 is... Victoria Graham!"

With those words, 23-year-old Victoria Graham won her first pageant in March. The win is much more than a tiara and a title to her. Its a chance to educate people about a condition she has called Ehlers-Danlos Syndrome (EDS).

"I’ve been able to go visit kids in the hospital and I’ve been able to tell them, 'Hey, I’ve laid exactly where you were laying,'" she said. "I’ve been able to muster up the courage to show that off."

Graham has spent the last 10 years of her life in and out of hospitals. At the age of 13, she was diagnosed with EDS following a gymnastics injury. EDS is a genetic disorder that affects the body's connective tissue. It can result in overly flexible limbs, dislocating joints and super elastic skin. EDS can also cause neurological and heart problems.

READ MORE ABOUT EDS

"I was always in pain and I always had my joints dislocating," said Graham. "I had to step away from gymnastics after my diagnosis but I did soccer and picked up lacrosse."

Determined to fit in, Graham played through the pain. She would pop joints back into place when they dislocated on the field. She never wore braces because she says she didn't want to stand out. At each practice and each game, her body worked against her.

"It was like someone was driving an ice pick into your skull and wrenching your body, and it made you just want to curl up and disappear," she said. "It was the worst pain I was in but it was the pain I was use to everyday."

Eventually it became too much and doctors told Graham she needed surgery. One surgery led to another, and to date, Graham has had 10 surgeries. One of the most serious ones is fusing her spine, which left behind a 25 inch scar running down her back.

She's had to wear neck braces to keep her brain steady, go through countless hours of rehab and has a drawer filled with medications to manage the pain and side effects of EDS. Through it all, she stays strong.

"If I can stand strong in the crummy body that I have now, then I will be able to stand strong later when things get a little bit more tough."

Its that strengthen that led her to compete in the Miss Frostburg competition. She wore dresses to show off her scar and delivered a monologue in a hospital gown for the talent portion. 

When she heard her name called as the winner, she couldn't believe her ears.

"I was in shock because I wasn’t expecting to win. I was expecting to just stand on stage and have fun or be able to share my story."

Now she is able to share her story with so many, thanks to the work she does through the Miss America organization. Her platform is called "But I Don't Look Sick," which raises awareness about invisible diseases. Graham says she's been accused of making up the symptoms or gets funny looks when she uses her handicap placard in her car.

"People don’t realize that we look fine and we’re trying to carry on as normal lives as we can, but we have to get through life because right now we don’t have treatments or cures. We have no alternative."

Research for those alternative treatments is being done at the Ehlers-Danlos National Foundation Center for Clinical Care and Research at GBMC, led by Dr. Clair Francomano.

Dr. Francomano says there are 13 types of EDS, and about 1 in every 5,000 individuals has this condition. The effects can range from mild to severe and can require multiple surgeries, like Graham's case.

"It's very difficult to predict what’s going to come next and we really wish we had medical therapies and alternative therapies that could prevent the necessity for surgery," said Dr. Francomano.

"Unfortunately right now we really have to stabilize people when they’re literally falling apart and surgery is pretty much all we have to offer."

In addition to educating people about EDS, Graham also has a non-profit to help those living with the condition called The Zebra Network. She works to provide support and promote advocacy for others who have EDS. Graham says the people she's met through her non-profit, and the work she does through Miss Frostburg, are an added source of strengthen on her toughest days.

"The reason I keep going is for the people who have supported me," she said. "For the hundreds of people who message me, telling me their stories, I fight for them."

Graham will be competing in the Miss Maryland competition in June in Hagerstown.