2017 Miss Frostburg Victoria Graham Uses Her Visible Scar to Help People With EDS
Victoria Graham, 22, had a difficult time growing up. Her life turned upside when she was diagnosed with EDS at the age of 13.
Ehlers-Danlos syndrome (EDS) is a rare inherited disease, affecting connective tissues such as the skin, blood vessel walls, and joints. People diagnosed with EDS have extremely flexible joints and sensitive skin. A scratch or wound can get a person with EDS a trip to the hospital and have it stitched simply because the skin cannot hold the open wound.
EDS is extremely hard to diagnose and her family had to spend three years visiting different specialists just to know what’s causing her injuries. And when they finally got a diagnosis, they also found out that most of the family members have some forms of EDS as well.
“My grandmother lived with EDS for nearly 70 years without knowing and my Mom had it 40 years. Nobody should have to live that long before finding out what’s going on with them,” she told BBC.
Victoria had 10 operations since 2014. “I’m fused from skull to my bum – all the way down,” she says. She also had to consume 20 to 25 medicines every two hours just to ensure her body is functioning properly. She had been bullied and was an outcast from most of the activities in her school.
Being in a pageant gave her the confidence to educate and inspire people suffering from the disease. And winning a competition was part of a deal she had promised to a friend after getting an operation.
Despite all the challenges, Victoria manages an EDS support group, The Zebra Network. “I saw a dire need for a network of sufferers and for someone to dedicate their life to that,” she says. Winning the title as Miss Frostburg also opened up opportunities for her to reach out to more people who are suffering from the disease.
As part of her help support, she visits kids in the hospital wearing a ball gown, sash, and crown. Her mission – to tell her story and motivate children to follow their dreams. “My favorite part is the look on the child’s face when they see this girl in a crown and sash and I’m able to say ‘Hey, I’m actually just like you’,” she said in the interview with BBC.
She lets children see her 25-inch scar that runs from her head down to the bottom of her spine.
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