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For Some, Birth Defects Are Diagnosed In Adulthood

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FAYETTEVILLE — Have you ever had pain that you could not explain?Imagine having it for most of your life. Not knowing what is wrong can be worse than the diagnosis.

"I thought I was clumsy, I thought I was inept," says Cindy Rogers.For most of her life, she has had problems doing simple things.

"I always had trouble as a child riding abicycle. The seat would hurt, and I would complain. My mother would say'you're fine, just goon,'" she says.

Rogers also had trouble sitting, standing and running.When she was in her early 30's, adoctor diagnosed her condition with the helpof an MRI. Many people are diagnosed with the birth defect as adults.

Rogers found out she hasspina bifidaocculta.

"It just floored me," she says. "It answered questions that I had, and that was such an important thing."

"Most people go through life if they have it andmay not know," says Dr. Richard Toselli of the UNC Spine Center.

Unlike the more serious form of spina bifida that we typically see in babies, Toselli says most cases of occulta are not noticable. It is simply a tiny bony defect in the spine.

Toselli says a small percentage of patients doexperience symptoms and should seek medical attention.

"Patients who have pain, patients who have skinchanges over their low back and patients whohave neurologic deficits -- namely weakness, numbnessor difficulty with their bladder -- those patientsare more likely to get a workup," he says.

"[The] first thing is attitude," says Rogers. "Try to have a positiveattitude, try to learn what to do to help myself."

Like Rogers, most people with spina bifida occulta are diagnosed asadults. Doctors say while there is no cure, most patients can still liveactive lives.

"Maybe I go slower than other people, maybe I goa little bit differently, but I still go," she says.

For Cindy Rogers, every day is about the quality of thejourney, not the time it takes to get there.

Doctors estimate that as many as 10 percent ofthe population has spina bifida occulta.

There is no cure, but there are treatments.

In the most serious cases, patients opt forminor surgery, physical therapy and painmedication to help then cope with theirsymptoms.

In most cases, people with occultarequire no treatment.

 Credits

Amanda Lamb, Reporter
Joe Frieda, Photographer
Michelle Singer, Web Editor

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