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Quality healthcare can be found in unexpected places.
We’ve all been guilty of panic-googling our various healthcare concerns. But for one woman, posting her woes to the most unlikely social media forum actually resulted in being diagnosed with a rare disease.
Six months ago, Imgur user CheyAdeleRose posted a photo thread that told the story of her struggle with a mysterious condition that no doctor had been able to name. A devoted dancer who dreamed of performing, Rose started suffering from repeated broken bones, fractures, and dislocations around the age of 12.
It got so bad that Rose was put into a wheelchair for an entire year at age 16, and was told that she’d probably never dance again. The series of photos she uploaded to Imgur detailed a history of hospital stays with brief returns to dancing in between. She ended by writing, “I have seen countless neurologists, neurosurgeons, spinal specialists, etc., and so far, no one has been able to tell me what’s wrong with me.”
Rose’s gallery made it to Imgur’s front page, and the comments section quickly filled with the stories of people who suffered from similar ailments. But Rose noticed a pattern developing: Multiple commenters, including some medical professionals, suggested that her symptoms sounded like a rare genetic disease called Ehlers Danlos Syndrome (EDS), Hyper Mobility Type III.
On Wednesday, Rose posted another Imgur photo—this time, a smiling selfie with a sign reading, “Imgur diagnosed me.”
Because of all the comments from Imgur users who pointed out the similarities between Rose’s symptoms and EDS, she went to a specialist and got tested. And on Wednesday morning, the results confirmed what so many Imgur users had suspected: Rose was born with the rare genetic condition.
“It’s something that I’m going to have to live with my entire life, but thanks to you crazy people, I finally have a diagnoses,” wrote Rose. “I have been searching for a ‘title’ to what’s wrong with me for years, and if it weren’t for you all, I wouldn’t have one.”
As it happens, May is Ehlers-Danlos Awareness Month. According to the Ehlers-Danlos Society, people living with the condition call themselves “zebras”—in reference to the rarity of the disease. And in case you didn’t know, a group of zebras is called a dazzle.
Dazzle on, Imgur!
Mary Emily O'Hara is an LGBTQ reporter. Her work has appeared in Rolling Stone, NBC Out, Daily Dot, Broadly, Vice, the Daily Beast, the Advocate, Huffington Post, DNAinfo, Al Jazeera, and Portland's Pulitzer Prize-winning newsweekly Willamette Week, among other outlets.