At first glance, Victoria Graham looks like your average, everyday young woman trying to navigate her way through the pageant world. However, this 22-year-old has an incredible story. Victoria lives with Ehlers-Danlos Syndrome (EDS). This is a rare genetic condition that affects her connective tissues. These tissues act like a “glue” that support the skin, ligaments, blood vessels, internal organs, and bones. EDS can cause joint hypermobility, skin hyperextensibility, and tissue fragility. Victoria’s EDS has resulted in extreme cranial and spinal instability.
(Victoria’s official crown shot as Miss Frostburg 2017. Photo: Facebook)
Starting in 2014, Victoria underwent 10 operations on her brain and spine to repair the damage cause by EDS. The surgeries left her with a 25-inch scar down her back.
“I’m fused from skull to my bum – all the way down,” she told BBC News. “Because I was able to move so much before, the vertebrae were dislocating themselves. I have a limited range of motion now, but I need to be stiff so my brain stem isn’t under pressure and my spinal cord isn’t being crushed.”
(Victoria poses to show her scar as part of the “But You Don’t Look Sick” photo series. Photo: Facebook)
It was only after Victoria was diagnosed, at age 13, did the family learn the condition was genetic. It turns out, her mother, brother, and other family members have lesser forms of the disease. Her grandmother lived with the condition for 70 years and her Mom 40 before being diagnosed.
“Nobody should have to live that long before finding out what’s going on with them,” she said.
In addition to the shear physical and mental toll the disease takes on her, Victoria is dismissed and discriminated against due to the invisible nature of her illness. At school, she has consistently struggled with teachers’ unwillingness to make accommodations. She also gets shouted at in public for using a disability parking pass. The harassment is part of the inspiration for her talent. In an attempt to raise awareness and educate others, she performs a monologue about EDS during competitions.
(Victoria’s crowning moment as Miss White Oak 2016. Photo: Facebook)
She says she entered her first competition in 2016 as part of a “bucket list” deal she made with a friend. She won the title of Miss White Oak 2016. This year, she was crowned Miss Frostburg 2017 and will compete at the Miss Maryland Pageant this summer.
“I stand on stage to say, ‘Hey, I have an invisible illness.’ to show others that they aren’t alone in their struggles,” she told Babble. “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.”