Sipping a red sports drink from a straw, smartwatch on her wrist, and curled, shoulder-length hair framing her face, Victoria Graham, 24, looks every bit the beauty queen.

But ask her, and she’ll tell you that each accessory has a purpose.

  • The watch helps 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 from a hairpiece she got after a section of her head was shaved during one of her 10 surgeries. Those operations 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.

(Allison Shelley for The Washington Post)
(Allison Shelley for The Washington Post)

“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, Md., was crowned Miss Frostburg this past April, and she’s using it as a platform to spread awareness for people battling invisible diseases like hers.

Diagnosis

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.

The diagnosis also helped her mother, brother, grandmother, two aunts and a cousin discover they also have the disorder.

Medications and makeup sit together on top of the dresser in Victoria’s bedroom. Right, Victoria injects a blood thinner called Lovenox, to prevent blood clots. (Allison Shelley for The Washington Post)
Medications and makeup sit together on top of the dresser in Victoria’s bedroom. Right, Victoria injects a blood thinner called Lovenox, to prevent blood clots. (Allison Shelley for The Washington Post)

Living with EDS

Victoria Graham was a student at Eastern University in Pennsylvia when she suffered a memory lapse during an organic chemistry class in 2014.

“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 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.

Zebra Network

Her neurosurgeon, Fraser C. Henderson of Chevy Chase, Md., 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 experience only mild symptoms.

Two birthdays ago, Graham 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 — the zebras instead of the common horses.

She’s the zebra.

Victoria Graham, 22, affixes her Miss Frostburg crown in her bedroom at her family’s home in Manchester, Maryland. (Allison Shelley for The Washington Post)
Victoria Graham, 22, affixes her Miss Frostburg crown in her bedroom at her family’s home in Manchester, Maryland. (Allison Shelley for The Washington Post)

Beauty pageants

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.

Her catchphrase at pageants is “But you don’t look sick.” 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.”

Miss Frostburg

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.”

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