Sipping a red sport drink from a straw, smartwatch on her wrist, and curled, shoulder-length hair framing her face, Victoria Graham looks every bit the beauty queen.
But ask her, and she’ll tell you that each accessory has a purpose. Graham wears the watch to help monitor her heart rate; if it dips too low, she is prone to fainting spells. The straw helps her to drink without moving her neck – an imperative because most of her spinal column is fused together. And the hair? Some is a hairpiece she got after a section of her head was shaved during one of her 10 surgeries — operations that left her with a 25-inch scar down the center of her back.
Graham, 23, has Ehlers-Danlos syndrome, a genetic connective tissue disorder that weakens the skin, joints and blood vessels.
“Collagen is like the glue that holds everything in your body together – every cell, every tissue, every organ. Everything,” she said. “And it’s supposed to be a tight and supportive basket weave, but in our bodies it’s falling apart.”
Despite the condition, the resident of Carroll County, Maryland, was recently crowned Miss Frostburg, the first in a series of pageants she hopes could lead to state and national titles.
And in her quest, she doesn’t hide the scar. In fact, it is showcased.
On Tuesday, Graham will celebrate her first birthday free of hospital gowns in three years. In June she will slip on a gown or two to compete for the title of Miss Maryland.
Her catchphrase at pageants is “But you don’t look sick” when, during the talent segments, she walks onstage in a disposable medical gown sewn loosely and slightly open at the back and delivers a monologue about overcoming obstacles.
“While other girls are singing beautiful songs and they’re in sparkly gowns and elaborate costumes, I’m in a hospital gown with an IV pole,” she said.
Why? “Because that’s who I am.”
Graham was 10 when she fell from gymnastics bars and felt pain in her back that never went away. Specialist after specialist could not understand what was wrong. It took three years and an observant physical therapist to get the diagnosis of Ehlers-Danlos syndrome, also known as EDS.
Headaches came after the back pain. At one point, Graham’s mother, Mary Beth Graham, said she bargained with God: “Give it to me, I’ll take it. Let her feel better.”
“The interesting part was the back pain – it was constant. She always told me it was a 10 out of 10,” said Steve Freeman, 45, Graham’s physical therapist for more than a decade. “From a visual standpoint, she did not appear to have 10-out-of-10 pain. I asked her mother, ‘Have you ever considered Ehlers-Danlos syndrome?’ “
It took a genetic test, and in less than 30 minutes the Graham family had the name of what plagued their daughter.
“You’re just thankful and relieved,” said Mary Beth Graham, an associate dean at Mount St. Mary’s University. “The geneticist said to us, ‘Would you feel better just knowing what this is?’ and we said, ‘Yes.’ “
Graham’s diagnosis helped her mother, brother, grandmother, two aunts and a cousin discover they also have the disorder.
A competitor at heart, Graham said that when she realized as a teen that she might not be able to play sports for long, she focused intently and was part of the 2011 state champion soccer team at Manchester Valley High School. She later played soccer and lacrosse at Eastern University in Pennsylvania, where she started on the pre-med track with a focus on genetics or neurosurgery because she wanted to learn more about EDS.
During an organic chemistry class in 2014, she suffered amemory lapse – “I couldn’t remember what I was doing, who I was, anything of that sort.” Her memory returned, but she realized while studying for an exam that she couldn’t retain information.
Because of a malformation, brain tissue extended into her spinal canal. As she described it in responding to the many questions about whether her neck brace was from a car accident, “My brain was falling out of my skull.”
She was 19.
Her skull was unattached and then reattached to her vertebrae. Her spine was fused, except for one level at the base. Her spinal cord was untethered from her spine twice.
A set of birthdays was spent in the hospital. And she got the back scar.
Her neurosurgeon, Fraser Henderson of Chevy Chase, Maryland, said that about one in 5,000 people have EDS, and Graham has one of the most common subtypes: the hypermobility type. Henderson said for some who have it, an injury can ignite years of unexplained pain; others never have symptoms.
For Graham, the beauty pageant poses are about making the invisible visible.
She’s like Dorothy in “The Wizard of Oz”: in her glittery dress and tiara, she turns to reveal the scar – and the full story of who she is.
“If I stand on stage in a bikini and people can see a 25-inch scar, maybe someone else will be a little bit braver, or have the courage to show their own scars,” she said.
The storytelling of her talent competition taps an original art form, her father said.
“She engages them, makes them think, she transforms them to a position where they’re feeling the emotions she’s feeling and she’s challenging the audience to better themselves – to think beyond the superficial,” said Bob Graham, a civil engineer.
For her birthday last year, Victoria started the Zebra Network, a foundation designed to spread awareness about EDS. The name references an old medical adage cautioning about being too hasty in arriving at exotic diagnoses – zebras instead of common horses.
She’s the zebra.
Graham takes 31 pills a day – prescription as well as supplements – and an injection for a blood-clotting disorder. She keeps an eye on how much fluid she takes in and on her caffeine and makes sure to eat potassium and take supplements to combat paralysis. She carries snacks and some kind of peppermint to reduce nausea. She’s slow getting out of bed to make sure she doesn’t pass out or dislocate an ankle, knee or hip when she stands.
New to the pageant world, Graham said it was something she talked about doing with her roommate one day before all of the surgeries, and now she’s checking it off her bucket list.
“There she was an athlete, and now she’s still competing in a whole different way,” said Amy Leasure, executive director of Miss Frostburg. “She has a way of energizing you and pulling you in. And it’s not just a platform for her, it’s her way of living day to day and it’s very personal.
“You’ve heard that saying, ‘Angels among us?’ That’s her.”
Graham feverishly connects with people all over the world about EDS – she uses Google Translate to talk to people in France. She visits hospitals even though the beeping sounds of the machines give her anxiety. And she’s always sharing her sash.
“I do it to show them, you can be in that bed, but you can wear a crown too,” she said. “Those two don’t have to be separated – you can combine them into one fantastic package.”