Growing up, Victoria Graham from Maryland was always very active. She practiced gymnastics and played other sports. But– at age 10– her family started to notice some unusual problems with Victoria. “I’d get injuries that weren’t normal,” she recalled. “Things weren’t adding up.”
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It took 3 years and multiple specialists to diagnose Victoria with Ehlers-Danos Syndrome (EDS) at age 13. EDS is a rare genetic condition to which there is no cure. The diagnosis kicked off an ongoing journey of treatments and surgeries.
Victoria underwent 10 operations on her brain and spine in 2014 alone. “Going under the knife for the third time this year,” Victoria wrote in the caption of the photo below.
It was after one of these early surgeries that Victoria and her friend decided to do a “bucket list” challenge together. The two decided to compete in a beauty pageant, something Victoria never thought she’d do.
Fast forward to 2017.
Victoria is now 22 years old and a beauty queen. She no longer competes in pageants as a bucket list challenge. Now, she competes to spread awareness about EDS.
The fact is, Victoria wasn’t the first person whose doctors struggled to diagnose with EDS. Many people suffer with it for years without knowing what’s wrong.
After Victoria’s diagnosis, a geneticist found that Victoria’s grandmother lived with a lesser form of EDS for 70 years, as did her mother for 40!
“Nobody should have to live that long before finding out what’s going on with them.”
That’s why Victoria now proudly shows her scars. She wants to raise awareness of the condition and is using her scars and pageants to do that.
“If you have the opportunity to use your voice, you should use it.” -Samuel L. Jackson #ButYouDontLookSick #MakingInsivibleIllnessesVisible â€¢ #MissWhiteOak #VictoriaGraham #BeTheChange #EarnYourCrown â€¢ #ehlersdanlossyndrome #chronicillness #invisibleillness #spoonie #spooniestrength #spooniestrong #spinalsurgery #spinalfusion #chiarimalformation #medicalzebra Photography: @moshezusman MakeUp: @mbfacedesign
Due to multiple surgeries, Victoria now has a scar that runs 25 inches down her spine.
She is constantly swallowing pills for pain relief so she can keep her body functioning. She also undergoes regular blood-thinning injections.
But her attitude is inspiring.
Victoria refers to EDS as an “invisible illness.” She says she often hears “but you don’t look sick,” and is discriminated against because of it. That’s why she shows off her scars in pageants; Victoria wants people to understand that– invisible or not– EDS is very real.
In fact, for the talent portion of her pageants, Victoria performs a monologue about living with EDS. She’s even created her own non profit EDS support group called “The Zebra Network.”
Whenever people ask Victoria if she feels weird showing her scar so openly, she admits that there was a time when it made her feel ashamed… but those days are long past.
“In my opinion, the 25-inch scar on my back is the most beautiful part of me. It makes me perfectly imperfect. It shows where I overcame a weakness – both literally and figuratively.”
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