When 21-year-old Cheyenne Rose posted her “Story of a Broken Dancer” on photo hosting platform Imgur six months ago, she hoped to inspire others to follow their dreams and do what they love.
What she didn’t expect was to receive a diagnosis that she says changed her life.
Rose says she suffered many injuries since she started dancing at three years old, including dislocated limbs, painful joints, and brittle bones.
“It’s been my whole life, it’s everything I’ve ever wanted to do but I’ve been plagued by a number of injuries,” she tells Tech Insider.
Her first injury occurred at age 12, according to her Imgur story. After that, her injuries only became more frequent. When she was 16, Rose says she was confined to a wheelchair because of intense hip pain and had to undergo surgery. She had no idea if she would ever walk or dance again.
Three years and multiple surgeries later, she was still dancing, but soon began to experience headaches, back pain, black outs, and more.
“I thought maybe if there’s anybody out there going through what I am maybe they will find some comfort in that I’m still dancing,” she tells Tech Insider about her decision to post about her struggle on Imgur.
Here’s her original story in full, which was seen by nearly 190,000 people on Imgur and was upvoted to the front page of the site:
But in addition to support, Rose also says she received the beginning of a diagnosis.
Though some people told her simply to stop dancing, an overwhelming amount of people began commenting on her original post or reaching out to her directly suggesting that she look into Ehlers Danlos Syndrome (EDS), Hyper Mobility Type III.
After doing some research and contacting her doctor, Rose says she got tested and discovered she has the genetic disease that affects connective tissues in the body.
She thanked Imgur users in a follow-up post on May 12. “Thank you, Imgur, from the bottom of my heart, you have helped me find closure in one part of my life,” she wrote.
There is no cure for the disease, so Rose says the only thing to do is treat her symptoms. For her specific case, she explains that means surgery to tighten up stretched-out ligaments that have no elasticity. The California State University Fullerton theatre major is having a surgery this summer to repair a shoulder damaged by the disease.
“It can kind of masquerade as a lot of different things,” Rose explains. That’s partly why it’s so difficult to diagnose, she says — the individual symptoms don’t necessarily point to the disease, and it manifests itself differently in everyone.
“It’s nice having a name for it,” she says. “At first it didn’t hit me as anything shocking because it’s been something I’ve been dealing with my whole life.”
The disease is a “double-edged sword” as Rose calls it: The very thing that makes her body so flexible and tall (she’s 5’10”) with long lines perfect for dance also threatens her dance career altogether.
But at least for now, she’s still doing what she loves.
“I’ve definitely been more cautious, I’m very aware of my body, what hurts, what doesn’t but as long as I can dance I’m not going to stop,” she tells Tech Insider. “Not yet at least.”
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