Victoria Graham looks like any other beauty pageant contestant at first glance. However, the 22-year-old student from Manchester, now in Maryland, has a rare genetic condition called Ehlers-Danlos Syndrome (EDS) that affects the connective tissues in her body. Her condition is on full display whenever she stands in a bikini on stage, manifested in the 25-inch scar down her spine.
Initially, Graham wasn’t as open about her diagnosis, which she received at age 13, hiding the condition from others until leaving school at 19. She told the BBC, “I would rather have my legs dislocate than someone see me in a knee brace.”
And reaching that diagnosis in the first place wasn’t easy. Graham grew up participating in gymnastics, where her coaches told her she was “too flexible.” However, she became acutely aware something wasn’t right after sustaining injuries during a gymnastics accident at the age of 10.
Graham described the situation, saying, “I’d get injuries that weren’t normal. Things weren’t adding up.”
EDS is considered especially challenging to diagnose as it does not manifest consistently. Doctors struggled to find a reason for the pain she was experiencing, some even suggesting she needed a psychiatric evaluation or that she was faking her symptoms to gain attention.
Graham spent three years seeing a series of specialists until, as reported by Babble, her physical therapist, Steve Freeman, recommended a geneticist who finally gave her the diagnosis. It was at this point that Graham and her family became aware that the condition was inherited.
Graham’s mother, brother, and certain other family members all had signs of the condition, though to a lesser extent. Her grandmother was even living with the condition for almost 70 years without being aware.
EDS is considered a collagen disorder, with the collagen being considered faulty genetically. This can result in joint dislocations and subluxations, pain issues, and random bouts of unconsciousness. Ligaments and tendons in the body may lack the necessary strength to provide stability. Before undergoing numerous surgeries, Graham’s brain was falling out of her skull, compressing the brainstem, which could have been fatal.
Beginning in 2014, Graham underwent ten operations on her spine and brain, most commonly to fuse vertebrae that were dislocating. While this limits her range of motion significantly, the procedures relieved pressure on your brain stem and spinal cord, potentially preventing more severe injuries.
Even though her illness is severe, Graham faces discrimination based on the invisible nature of the condition. This includes being scorned for using a disability parking pass.
To help raise awareness about EDS, Graham now speaks about her condition during pageants, continuing to do so after winning her first local title, Miss Frostburg.
Graham also started a non-profit for those with EDS called The Zebra Network. The organization serves as a support group for those suffering from EDS while also raising awareness about the condition.