When she was growing up, Chelsea Smith thought she had an advantage over other girls.
She was double-jointed, which made her naturally flexible and highly sought-after by cheerleading and gymnastics coaches.
Her arms and legs were long and lean, and her skin was so soft even strangers would comment on its silkiness.
It would be years before Smith would learn that those same qualities that made her special were the manifestation of a medical condition that could ruin her life.
Smith, a 21-year-old Fayetteville resident, suffers from hypermobility syndrome, a genetic collagen defect usually found in girls and women. In laymen's terms, it means she's double-jointed.
But not all double-jointed people have problems, or at least problems as severe as Smith's.
Joint hypermobility can weaken the connective tissue around joints, causing intense, debilitating pain, fibromyalgia and osteoarthritis, as well as serious complications in pregnancy for those who suffer from it, according to a 2003 article written by Dr. Rodney Grahame, a rheumatology professor at University College in London.
People who have it are usually women, and it is usually found in people of Asian origin, African descent or Middle Eastern descent, Grahame said.
But as painful and prevalent as HMS can be, Smith would soon realize it is rarely diagnosed in the U.S., and doesn't have the backing of a foundation or awareness organization in this country.
Pain in hips, back
Smith was diagnosed in February, six months after waking up with an inexplicable, but severe, pain in her hips and lower back. She hadn't been injured, and there had been no change to her routine.
She was attending UNC at the time, but soon was so debilitated that she left for her parents then-home in Asheville to look for treatment. The family moved to Fayetteville in July.
At the time, orthopedic surgeons and rheumatologists found nothing wrong with her. Specialists at Duke and Emory were either stumped or suspicious.
"They thought I was crazy," Smith said. "They were telling me to deal with the pain."
But Smith and her mother, Debra, knew better. Dealing with it was not an option.
"It was like an elephant was sitting on my back," she said. "And it felt like hot pokers were prying my hip away from my leg."
Debra Smith said it was horrifying to watch her daughter go from an outgoing, active honor student one day to a screaming, near-invalid the next.
In a last ditch effort for an answer, Smith went to a family doctor.
"She looked at me funny, and said, 'Stand up,' " Smith said.
The doctor noted how Smith stood, with her knees locked, back bowed, shoulders slightly hunched, and saw that Smith was double-jointed.
A light went off in the doctor's face. She told Smith about the possibility of HMS and recommended a physical therapist familiar with it.
Within days of therapy, the worst of the pain was gone.
The therapist immediately realized Smith's hip had popped out of its joint. After relocating it, the therapist gave her a velcro belt to keep her hips in place.
Changing habits
She also showed Smith how to sit and walk and pick up and reach for things that keep her from overextending her limbs. Then she used Pilates moves to help strengthen Smith's core muscles in her back and stomach.
"You need to be stronger than a normal person would be," Smith said. "I completely change how I go about things."
She also knows she can't put her body in certain positions, such as reaching for her purse in the back seat of the car, or carrying grocery bags with her arms hanging down.
"The biggest thing I'm learning is my new normal," she said.
And while the process is still "long and arduous," Smith said it has changed her life.
But she doesn't want others to go through the same thing she's been through, so she's trying to let people know about HMS.
Most doctors who know about it don't think of it as harmful.
Somewhere along the way, double-jointedness was found to be interesting or odd, but not a serious medical threat. So when women suffering from the condition began complaining of pain, doctors didn't usually put the two together.
But the research and results are there. The United Kingdom has several clinics for the disorder, and a diagnosis could save time and money, Smith said.
"It's so easy to screen for it," she said. "A five-minute talk is all it takes. If doctors would be proactive, rather than reactive, it would save so much time and money, bouncing from specialist to specialist."
Smith started a blog -- www.hypermobilityhope.blogspot.com -- as a way to reach out to others who might have the condition. She hopes to start a movement that will draw attention to HMS and bring others together.
"It's a very, very isolating thing to not have anybody understand you, not even the doctors," she said.
Smith said she worries about her future -- whether she'll be able to hold down a job or have a family. Right now, she doesn't know.
"There isn't a road map for this," she said. "There's no one to guide me through this. I'm driving blind."
Staff writer Jennifer Calhoun can be reached at calhounj@fayobserver.com or 486-3595. To see more of The Fayetteville Observer, or to subscribe to the newspaper, go to http://www.fayettevillenc.com/. Copyright (c) 2009, The Fayetteville Observer, N.C. Distributed by McClatchy-Tribune Information Services. For reprints, email tmsreprints@permissionsgroup.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.
Copyright (C) 2009, The Fayetteville Observer, N.C.