22-year-old Maryland college student Victoria Graham was crowned Miss Frostburg in October — and she's using her platform to raise awareness about a rare disease.
Graham was diagnosed with a severe form of Ehlers-Danlos Syndrome in her teens, a genetic condition that affects the connective tissue in the skin, blood vessels, and joints. Its symptoms include skin fragility, overly flexible joints and cranial and spinal instability. For Graham, this resulted in ten operations on her brain and spine — and a 25-inch scar along her spine.
"I went through a period, up until age 19…[when] I was embarrassed beyond belief about my illness," she told Yahoo Beauty.
AdvertisementADVERTISEMENT
Each day, she told Yahoo, she takes 31 pills and a blood-thinning injection to manage her illness. Some days, she is temporarily paralyzed by the disease, and on others, her joints dislocate. The pain, however, persists constantly — something that she had a frustrating time convincing doctors about.
"Before and even after my diagnosis, I have trouble communicating my pain in a way that medical professionals can understand and take seriously,” she told Yahoo. "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."
She also told Yahoo that the pain is usually "anything from full-body, quadriplegic paralysis to limbs not responding or moving."
"It is caused by hypokalemic periodic paralysis or the potassium in my body dropping low," she said. "I once went paralyzed on a date — that was fun!"
Now, to continue to shed light on EDS, Graham launched The Zebra Network, a nonprofit organization that educates, advocates, and supports patients of a disease that can often be invisible.
"We are able to give blankets, soaps, pajamas, Barkthins chocolate, and other donated items to patients who are having surgery," she told Yahoo. "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."