Victoria Graham is a 23-year-old student from Maryland, president and founder of The Zebra Network, and current Miss Frostburg. When you see her perform in pageants, you may see a woman who looks similar to the others on stage — complete with beautiful face and a sparkly dress. But once she turns around to walk back to her place, you can see it.
If you look closely enough, you can spot the 25-inch scar lining her back. It stretches from the bottom of her skull all the way down to her tailbone.
The scar serves as a reminder of the 10 brain and spinal surgeries that Graham has gone through just so she can stand up straight. Graham has Ehlers-Danlos syndrome (EDS), a rare genetic disorder that affects collagen production in the body. She competes in beauty pageants to bring awareness to the issue of invisible diseases like her own. Her platform goes by the tagline “But You Don’t Look Sick: Making Invisible Illness Visible,” and it focuses on highlighting the rare and unseen disorders that cause over 138 million Americans to suffer.
The so-called “invisible illnesses” that its victims, like Graham, endure every day can be physically, mentally, and emotionally grueling. Graham says that while she may appear normal to others, some days she is unable to walk more than a few steps without her body either crumpling on itself or causing her to lose consciousness.
“On bad days I’ll get out my handicapped permit, and I’ve gotten yelled at for it in the middle of a coffee shop,” Graham tells Babble. “There are understanding people, but a lot of people are cruel. Just because I don’t look sick, doesn’t mean I’m not sick.”
Through her platform, and the work with her non-profit, Graham raises awareness about EDS and other types of invisible disorders. She also participates in community service and helps in local events in and around Maryland, visiting patients in the hospital and providing mentorships in her “Princess Program.” The Princess Program, which is run through the Miss Maryland program, focuses on pairing a beauty pageant title holder with “princesses” in the community.
Four of Graham’s current princesses have the same disorder that she does. Another princess, Juliana Carver, was a Children’s Miracle Network participant who battled cancer eight times before passing away on October 24th, 2016. When Graham visited Carver at the hospital only three days before she died, the two young ladies joked about how itchy hospital linens can be. Carver told Graham at the time that she always kept a blanket between her and the hospital sheets.
In Carver’s honor, Graham now collects blankets for hospitalized children so they can be a little more comfortable during their stay. She delivered her first donation of over 200 blankets shortly before the holidays, and continues to accept donations for the year-round Angels For Juliana memorial.
“I was robbed a bit of my childhood because of my medical issues,” Graham notes. “And it’s these little things that make a huge difference.”
Graham’s own journey began when she was 10 years old. A gymnastics injury sent her to doctor after doctor, trying to find an explanation for her pain. The doctors were stumped, some even going as far to suggest that either Graham needed psychiatric help or she was faking her symptoms for attention. It was a long road to actually getting her diagnosis of EDS, but at the age of 13, it was suggested that she may have this disorder. Her physical therapist, Steve Freeman, referred her to a geneticist who then confirmed the disease. The fact that it took three years to get diagnosed is actually pretty fast when compared against the 45+ years it can take for others. Graham hopes that bringing awareness to these diseases will get more people diagnosed quickly.
With EDS, Graham explains that the collagen in her body is faulty at the genetic level, causing her joints to dislocate, random bouts of unconsciousness, immeasurable pain, and leaving her brain without support. “My body is quite literally falling apart,” she says.
At one point, before one of her surgeries, her brain was actually falling out of her skull. The ligaments and tendons in her spine were so weak that her brain was compressing the brainstem — to the point that even the slightest wrong move could have killed her. After the surgery, her doctor compared it to balancing a bowling ball on top of a pool noodle, exclaiming that he didn’t know how the young woman was still alive.
With her spine completely fused now, Graham has continued to live an active lifestyle and played sports all through college. She manages her symptoms — which include full-body paralysis if her potassium levels get too low. She originally decided to compete in a beauty pageant in October 2015, as a way to cross off a goal on her bucket list. She had undergone four surgeries at this point, and her and her roommate wanted to try something new. From there, Graham competed for Miss Maryland and won the non-finalist Top Interview Award. She went on to win her first pageant in March 2016. In October 2016, she won the title of Miss Frostburg, only two weeks after two of the biggest surgeries of her life.
“It’s been one of the best things to ever happen to me,” says Graham.
Through her work, Graham hopes to teach young women specifically that they are not defined by their diagnoses. She spoke to Babble from Capitol Hill in Washington D.C. where she was advocating for the passage of several bills during Rare Diseases Week, including the OPEN Act (Orphan Product Extensions Now, Accelerating Cures & Treatment) which would allow drug companies to use drugs for multiple therapies (instead of just one). Many rare diseases are treated with drugs not meant for their original purpose.
“I stand on stage to say, ‘Hey, I have an invisible illness,’ to show others that they aren’t alone in their struggles,” says Graham. “It’s overcome-able, I’m not aiming to be an inspiration; my goal is to show people if I can do this, you can do it.”