“My Knees…You Can Dislocate Them by Touching Them with a Finger”

Davina is telling her story, and explaining her struggles with Ehlers-Danlos Syndrome. She wants to promote EDS Awareness during this month of May. 
By LYNN SCHMIDT   Staff Writer  Lancaster Online

Davina“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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