When it all started, she thought that she was just especially flexible. She was a dancer, after all.
“Right around puberty I noticed that I could dislocate my shoulder on the left side and I just thought it was kind of a cool party trick,” says Michelle Shuman, 27, of Columbia.
But soon the dislocations became severe. She was lifting a girl during a dance routine when she was in high school when both of her shoulders dislocated.
After several failed surgeries, Shuman had her left shoulder fused to limit the range of movement so that it would no longer dislocate. It was the beginning of a long journey that would include a total of 12 surgeries and years without a diagnosis or explanation.
It wasn’t until January that Shuman says she was officially diagnosed with hypermobile Ehlers-Danlos syndrome, an inherited connective tissue disorder that causes an unusually large range of joint mobility, according to the U.S National Library of Medicine Genetic Home Reference.
Though Shuman’s condition occurs in as many as one in 5,000 people, the nonprofit Ehlers-Danlos Society calls it “one of the most misunderstood and underdiagnosed syndromes in history.”
“Physicians often don’t recognize illnesses because they are taught to think about horses in diagnosing diseases and not zebras — in other words, to look for common illnesses in patients and not rare ones,” Shuman says.
The zebra has become the mascot for the Ehlers-Danlos Society. In an effort to spread awareness of the condition, Shuman is organizing a “black-and-white day” on May 21, asking supporters to share pictures of themselves wearing the colors on social media.
Shuman, meanwhile, has been using the platform to share her story. On the Facebook page “Michelle Shuman – EDS Journey,” she’s shared artistic black-and-white photos of her scars, detailed explanations of her treatments and video updates following her surgeries.
Her mother, Beth, says the Ehlers-Danlos diagnosis the family find help and a path forward.
“Surprisingly, I felt relief to have it officially diagnosed,” Beth Shuman says. “We joined a support group that meets three or four times a year, plus two or three social gatherings. She started to meet peers that were just like her. I was able to talk to care givers and get ideas of ways to help her.”
Though the diagnosis offers some peace of mind, Michelle Shuman’s condition continues to worsen.
Shuman started feeling numbness in her legs and now depends on a power chair to get around. Her parents have modified their car to get her to appointments and had a ramp built into their house to make it accessible for her.
Her father, Steve Shuman, hopes that raising awareness and continued Ehlers-Danlos research can help Michelle get back onto her feet.
“Michelle’s educational and career goals have been derailed at every turn due to ailments, surgeries, recovery time, physical therapy or just an inability to handle the rigors of a particular job,” Steve Shuman says. (Michelle has been unable to work but hopes to attend beauty school when her health stabilizes, she says.) “I hope that new ailments cease. That she finally has an uninterrupted path through school or training so she can not only obtain a job, but maintain it, support herself financially, move out of our home and live on her own.”