Woman's death brings national attention to rare gastrointestinal disease

Beener said most people with gastroparesis travel hundreds of miles and go to other extremes to seek diagnosis and treatment.

"There's just not a lot of understanding of this disease," she said. "There's not a lot of research going on about this disease. There aren't any good medications in this country for the disease. Most of us that find something that works, we get it out of the country and it's not FDA approved, but we do it anyway because it's the only way we can get through the day."

Dr. Troy Madsen, an emergency physician at University Hospital, said gastroparesis is difficult to diagnose.

"There isn't a blood test that can simply diagnose it," he said.

Madsen said the tests to diagnose the illness are invasive and can result in inconclusive diagnoses. Still, he recommends patients seek a gastrointestinal specialist to better diagnose the disease.

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