Woman's death brings national attention to rare gastrointestinal disease

Published: Thursday, Oct. 18 2012 1:58 a.m. MDT

Haley Stonehocker 18, of Mapleton, died from a rare disease known as gastroparesis in her sleep last week. Her death ir raising national awareness about the disease.

Jay Dortzbach, Deseret News

MAPLETON — The death of a Utah woman is raising national awareness about gastroparesis and inspiring people across the country.

Haley Stonehocker, 18, of Mapleton, died from the disease in her sleep last week.

Gastroparesis, or a paralyzed stomach, is a condition that affects people of all ages and races. The disease inhibits the stomach muscles' ability to function properly, which can interfere with digestion. It causes nausea and vomiting, and affects the body's ability to receive proper nutrition.

With a green ribbon on their chests, members of the Gastroparesis Patient Association for Cures and Treatments online community gathered at Stonehocker's funeral Tuesday, standing together to honor one of their own. They call themselves "GP Sisters."

The women, who are in their early 20s, traveled from areas of Nevada, Idaho and Utah to honor the young woman they met just a couple of years ago.

Cortney DeHoyos, of Denver, said Stonehocker inspired her to help educate others about the illness.

"I had to drop out of college because I'm so sick all the time," DeHoyos said. "I'm constantly in and out of hospitals."

Having the illness can be discouraging for young people who suffer with symptoms daily, she said.

"Sometimes people find our illness so unique and rare so it can't be real, so we must be making it up," DeHoyos said.

"(Gastroparesis) basically took me from being a mom to being in bed 24/7 and having my parents raise my kids," said Chelsea Rushton, of Syracuse.

Patients describe the illness as having constant morning sickness or daily flu symptoms.

"It's very difficult just driving on the road," said Maddie Cullen, of Boise. "Many of us are nauseous just sitting in bed."

Some say having the disease is especially heartbreaking for younger people because they say their peers just don't understand what they're going through. Some say they've lost friends because of the disease.

"You don't know if you're going to wake up and feel nauseous," said Stephanie Hyatt, of Denver, "and go somewhere and have to go vomit in the bathroom and cancel on friends."

For Rushton, the emotions of losing her friend are still raw. Just weeks ago, she visited Stonehocker in the hospital.

"We would text all night," Rushton said. "My husband would tell me, 'Get off the phone and go to bed,' and I just couldn't."

Stonehocker became bedridden and was tied to a feeding tube in the hospital.

Cullen is studying at the University of Utah and hopes to become pediatric gastroenterologist. She said Stonehocker inspired her to want to help kids suffering with gastroparesis.

"We've already lost a few (people) this month to GP," Cullen said. "It's a lot harder than older people who have passed away or lived more of their life. She never got the chance."

Hyatt said belonging to the online community with Stonehocker was a tremendous strength to her.

"She'd always say that I'm such a beautiful person inside and out," Hyatt said. "How I could make it through everything."

Colleen Beener sits on the board of the association, also called G-Pact. Beener said it's not clear how many people nationwide suffer from gastroparesis, mainly because the illness is often misdiagnosed as an eating disorder.

"There are very few good doctors who understand this disease," she said.

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.

Email: niyamba@ksl.com

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