It’s hard enough to live with an illness, but there’s a whole new level of hardship when that illness is invisible to everyone around you. Two young women, both diagnosed with Ehlers-Danlos Syndrome, are pioneering to make their struggles with their illness understood.
Cheyenne Rose, a theater major at CSU Fullerton, was at a loss about what was wrong with her health, to the point of posting the timeline of her countless severe injuries on Imgur. Rose has been a dancer her whole life and wanted to pursue her passion for performance in college. But she’s also broken several bones, used a wheelchair for a year, and had two hip surgeries all before she graduated high school. For a while, it didn’t seem like Rose would ever be able to dance again.
Even after successful surgeries and a slow transition back to dance, Rose still had many physical health issues. In her Imgur post, she writes how she wishes she was actually healed but had been experiencing “extreme back pain, headaches, blacking out, and loosing feeling in [her] arms and legs while dancing.” It seemed like no one knew what was wrong…until Imgur users stepped in.
Many people commented on what they thought it could be, but the one answer Rose received most often was that her symptoms sounded a lot like Ehlers-Danlos Syndrome (EDS), in particular the Hypermobility Type. The disease is one of connective tissue, thought to alter the collagen in the body, affecting the joints and leading to easy dislocation. This prompted Rose to go to a specialist to get tested.
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Turns out, Imgur was right. Rose had been born with the rare disease. She posted another photo thanking the online community for helping diagnose her. In an interview with College Candy, Rose emphasized how huge of a relief it was to have a diagnosis. With doctors constantly saying nothing was wrong, “to finally have a reason for my problems made me want to cry. It was this beautiful moment of pure bliss, because for the first time in months I didn’t feel crazy.”
The Daily Dot then covered Rose’s story, helping make it viral in May, which happens to be Ehlers-Danlos Syndrome Month. Rose’s experience made its way around the Internet, inspiring many other people with EDS to reach out to her. One of those people was Victoria Graham, one of the 26 contestants who participated in the 2016 Miss Maryland USA pageant.
Graham, a student at Eastern University, has intense nerve pain and can dislocate joints very easily, similar to Rose. She has undergone eight spinal surgeries to keep her brain from slipping out of her skull, as a result of EDS. In her story to the Daily Mail, she explains, “I know full well that while I’m in my evening gown I could trip and dislocate, even someone touching me could cause it to happen, but bringing awareness to this condition makes it worth it.”
Despite all the pain, Graham continues to do great things for her community. She has upheld her title of Miss White Oak 2016 by participating in several charity fundraisers and awareness events. Graham’s pageant platform focuses on making invisible illnesses like the one she suffers from visible, spreading awareness to the general public. Her campaign, called “But You Don’t Look Sick” captures the beauty and strength of those who suffer from diseases that aren’t obvious to the naked eye. This foundation showcases real people with real illnesses, including EDS, with the goal of bringing awareness.
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Graham reached out to Rose after her story popped up on the Internet and asked her to join the foundation. They have since supported each other immensely over social media. They have shared each other’s stories and Rose has expressed support for Graham’s run for Miss Maryland. The two are both attending the National EDS Conference July 14-17 in Maryland, where Graham will be speaking and Rose hopes to learn more about her condition. But the most impressive thing of all is, despite the horrors their bodies undergo, Rose and Graham continue to push forward and continue to inspire those around them everyday.