Beauty Queen Exposes Surgery Scars to Bring Visibility to Her Disease

Victoria Graham is much more than just a pretty face.

The 22-year-old Maryland college student, who was crowned Miss Frostburg in October (a local title associated with the Miss America Organization), is on a mission to raise awareness about Ehlers-Danlos Syndrome (EDS) — a rarely diagnosed genetic condition that affects connective tissue in the skin, joints, and blood vessels. The reason: Graham was diagnosed with a severe form of this disorder when she was in her teens.

While she named her platform, “But You Don’t Look Sick — Making Invisible Illnesses Visible,” Graham’s 25-inch spine scar (which reaches from directly beneath her skull to her tailbone) is on full display when she’s walking down a runway wearing a backless evening gown. However, this level of confidence took time to build.

“I went through a period, up until age 19 … [when] I was embarrassed beyond belief about my illness,” she tells Yahoo Beauty.

In fact, she never imagined herself entering a beauty pageant. “In reality, I did not really understand them,” admits Graham. “My roommate and I were sitting one evening discussing how we needed to do something ‘crazy’ and something we had never done before. We wanted to cross something off a bucket list. We decided either [auditioning for ABC’s] The Bachelor or [entering] a pageant.”

Victoria Graham has Ehlers-Danlos Syndrome — a rarely diagnosed genetic condition that affects connective tissue in the skin, joints, and blood vessels. (Photo: AllyKat Photography)

Graham says she decided to “bite the bullet” and swallow her pride after she realized her life “was no longer on a path” she was in control of, she explains. “I needed to do things I never would have before because I was changing, and I wanted to try everything that life had to offer while I still could,” Graham added.

And that’s because behind her winning smile is a young woman who’s been suffering from excruciating pain on a daily basis for about 10 years.

“Before and even after my diagnosis, I have trouble communicating my pain in a way that medical professionals can understand and take seriously,” says Graham. “Around age 12, one doctor dismissed my pain by saying, ‘Oh sweetie, if you were in that much pain we would be peeling you off the ceilings! But look at you, you’re smiling!’ And yes, I smile — and I will always smile because I am alive.”

The 22-year-old Maryland college student was crowned Miss Frostburg in October 2016. (Photo: AllyKat Photography)

The pain is typically caused by her overly flexible joints, which regularly dislocate because of her condition. While Graham takes 31 pills and one blood-thinning injection each day (her medication schedule runs from 7 a.m. until 1 a.m.), at times her body does not cooperate and she is temporarily paralyzed.

This means “anything from full-body, quadriplegic paralysis to limbs not responding or moving,” explains Graham. “It is caused by hypokalemic periodic paralysis or the potassium in my body dropping low. I once went paralyzed on a date — that was fun!”

Graham also confesses that there are days she’s not strong enough to get out of bed. “I begin my alarms about two hours before I actually need to be awake so that I leave myself enough time in case something in my body is off,” she says. “On days when I am not feeling my best, people will ask how I am, and I’ll respond, ‘Upright.’ Or they may say that I look great, and I will respond, ‘The makeup helps!’”

To shed light on EDS, last year Graham launched The Zebra Network, a nonprofit organization that educates, advocates, and supports patients about this “invisible” disease. “We are able to give blankets, soaps, pajamas, Barkthins chocolate, and other donated items to patients who are having surgery,” she explains. “My dream goal is to have a home to house and feed patients during their stay. We would have a rehabilitation for surgical patient to safely walk, and transportation services to take them to their appointments.”