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Study finds rare disease misdiagnosed

SAN FRANCISCO, Nov. 7 (UPI) -- Researchers tracked U.S. patients with a rare muscle and bone disease to determine how common a problem misdiagnosis is.

Fibrodysplasia ossificans progressiva is a genetic disease that can lead to complete disability. It is found in only 1 in a million people.

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Tracking a group of 138 patients from around the world with FOP, researchers found that the disease was misdiagnosed almost 90 percent of the time. Patients went through six doctors on average before one recognized the disease. A great majority of patients went through unnecessary invasive procedures such as biopsies or received inappropriate treatment.

"It is unfortunate that individuals afflicted with this rare disabling disease have suffered further serious problems due to incorrect diagnoses by their physicians," said Dr. Joseph Kitterman, a professor of pediatrics at the University of California, San Francisco.

The findings were published in Pediatrics.

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