Humanitarian, research effort in Utah combats rheumatic heart disease in Samoa

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NORTHERN UTAH -- When it comes to preventable heart diseases, rheumatic heart disease is the number one killer of children worldwide—and the number of cases is particularly high in the Pacific islands.

In Samoa, 80 out of every 1,000 residents will get the disease and researchers at Brigham Young University and Utah Valley University are working to change that.

Rheumatic heart disease rates are higher in Samoa than any other part of the world--most likely due to the unique genetic architecture of the Samoan people. No one is certain of the exact reason, but a research effort is hoping to provide a lot of answers.

"We don't know where we could've gotten this help to save our children, basically,” said Dr. Farrah Fatupaito, head of pediatrics for National Health Services in Samoa.

That help came from a group called "Rheumatic Rescue." A friend of cardiologist Marvin Allen and his wife had served a mission in Samoa for The Church of Jesus Christ of Latter-day Saints, and that friend mentioned there was a problem with the disease there.

Doctor Allen's wife, Lori, was looking for a doctoral thesis.

"So she came up with the idea that, ‘Let's go to Samoa, I'll teach the children and the parents about this traumatic disease, you can bring your ultrasound machine and screen the kids,’” Doctor Marvin Allen of Central Utah Clinic said.

Every year since 2009, The Allens and nursing students from UVU have been going to Samoa. They educate the people about rheumatic heart disease and screen children for it, then treat the ones who have it.

The group has also gathered DNA from saliva samples, and what they learn from the samples is one of the most important aspects of their work.

"This program is unique in that it is not just a humanitarian effort, it's also a major research effort that will address, and is addressing, rheumatic heart disease, which is the number one killer of children worldwide, from a preventable heart disease,” said Adonica Kauwe, who is the Chief Financial Officer for Rheumatic Rescue.

Kauwe was a UVU nursing student and one of the first to go to Samoa with Rheumatic Rescue. Now she's the CFO and has been back every year.

She knows what a killer rheumatic heart disease can be.

"It shouldn't be," she said. "We know what causes this disease. We know how to treat it. We know how to prevent it."

Nurses and community health students from UVU and BYU prepare for a full semester prior to going to Samoa and learn about politics, culture and the Samoan language.

“But 5 year olds, we'd do a puppet show, we sing songs with them--all in their native language, so they understand,” Kauwe said.

The Utah teams are teaching their techniques to Samoans.

“Ultimately our goal is to train them how to do what we're doing, so that, ideally, we would be obsolete in five years,” Allen said.

Doctor Allen hopes to take what is being learned in Samoa and use it to help in other parts of the world. The Allens and a group of 40 are heading to Samoa for another Rheumatic Rescue mission on May 7.

For more information about Rheumatic Rescue, visit their website.