Sipping a red sports 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 the 23-year-old from Manchester in Carroll County will 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 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."
She was recently crowned Miss Frostburg, and 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 medical gown 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. "I asked her mother, 'Have you ever considered Ehlers-Danlos syndrome?' "
A genetic test gave the Graham family the name of the condition that 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.' "
The diagnosis helped her mother, brother, grandmother, two aunts and a cousin discover they also have the disorder.
Victoria Graham said the realization that she might not be able to play sports for long sharpened her focus. She was on the 2011 state champion soccer team at Manchester Valley High School.
She later played soccer and lacrosse at Eastern University in Pennsylvania. She started on the pre-med track with a focus on genetics or neurosurgery because she wanted to learn more about EDS.
During a chemistry class in 2014, she suffered a memory lapse — "I couldn't remember what I was doing, who I was." Her memory returned, but due to a malformation, brain tissue had extended into her spinal canal.
She was 19.
Her skull was re-positioned on her spine. 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 C. Henderson of Chevy Chase, said about one in 5,000 people have EDS. Graham has one of the most common subtypes: the hyper mobility type.
For Graham, beauty pageants make the invisible visible.
"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.
Victoria Graham started the Zebra Network, a foundation designed to spread awareness about EDS. The name references a medical adage cautioning about being too hasty in arriving at exotic diagnoses — the zebras instead of common horses.
She's the zebra.
Graham takes 31 pills a day — prescription and supplements — and an injection for a blood-clotting disorder. She keeps an eye on how much fluid she takes in and makes sure to eat potassium and take supplements to combat paralysis. She's slow getting out of bed to make sure she doesn't pass out or dislocate an ankle, knee or hip.
She connects with people all over the world about EDS. She visits hospitals and she's always sharing her sash.