“My Knees…You Can Dislocate Them by Touching Them with a Finger”
“In middle school, Davina Shober, 20, of Lancaster, says, she would miss months of school at a time from severe abdominal and gastrointestinal problems. Her senior year in high school, she says, she missed the entire second half because of nerve pain.
Shober’s knees and hips would dislocate on a daily basis, and she suffered horrible back pain. She started working at Musser’s Market when she was 16, but “my medical problems caused me to call off a lot.” Pain that spread from her back to her hands and feet finally forced her to stop working.
After much blood work, CT scans, bone scans, several MRIs and more, Shober was diagnosed in March 2011 with Ehlers-Danlos syndrome.”
Ehlers-Danlos is a genetic defect, explains Dr. Gregg J. Fasulo, a physician at Lancaster Orthopedic Group, and a diagnosis that comes from exclusion — done mainly by genetic testing after other causes have been eliminated.
People with Ehlers-Danlos have a collagen deficiency, overly flexible joints and stretchy, fragile skin, according to MayoClinic.com. Fasulo says severity of the syndrome runs the spectrum, and it can get progressively worse. A severe form of the disorder, affecting the vascular system, can cause the walls of your blood vessels, intestines or uterus to rupture.
“There is no cure,” he adds.
It’s Fasulo whom Shober credits for first suspecting she had Ehlers-Danlos after she had gone to him for problems with her knees. He referred her to Ami Milton, of Lancaster Arthritis and Rheumatology Care, for confirmation.
“My knees, you can dislocate them by touching them with a finger,” Shober explains. “Some days I can’t even dress myself.”
On some days, if nerve issues aren’t severe, Shober can get around using her wheelchair or crutches. “My mom is very helpful, and my friend’s parents,” she says. She has filed for disability and was denied, she says. She plans to appeal.
“If you would look at me, you would have no idea I have this disorder,” Shober says. Each day, she has a routine she must follow: “I make sure my hips are in place before I get out of bed. I ‘relocate’ my shoulders, crack my back, relocate any hips that may have gotten out of place.”
She learns to set limits on herself, knowing overexertion would mean being in bed for days with pain. “I can overdo it without even realizing it,” Shober says. “It’s a lot about knowing what my limit is.” It’s difficult for others to understand, and she feels socially isolated.
Yet Shober continues taking college courses — online — and hopes to eventually attain a nursing degree. Of course, the social component of attending college on campus is lost.
“Having pain on any given day makes it hard to keep a schedule with friends,” she says. “It’s very difficult for my friends to understand. I’m one of those people who talks it out when I’m dealing with something … I have overexplained and pushed people away.”
Still, Shober says, she has made friendships, and a friend who suffers back pain herself is especially understanding. Because May has been designated Ehlers-Danlos Awareness Month, Shober decided to share her story outside her network of friends.
“It’s about awareness,” she says. “It’s easier for us to live our lives, and for those around us, if they understand what we’re dealing with.”
Those of us with EDS want others to know more about this disorder and have a better understanding of how we have to deal with this disability.
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