A poster shows carriers and effects of Chagas’ disease as a person… (Michael Robinson Chavez,…)
The cryptic letter arrived a few weeks after Maira Gutierrez donated blood for the first time in 1997. The Red Cross had rejected her blood. It listed a phone number to call.
Gutierrez left a message, then waited three agonizing days for a reply, fearing she had HIV. The truth proved more confusing than reassuring: She had something called Chagas' disease, an ailment she'd never heard of, spread by a winged insect incongruously dubbed the "kissing bug."
A Red Cross pamphlet told her the parasitic affliction could be fatal — it could stop her heart. But doctors she consulted didn't know how to help her or treat the disease.
Photos: Chagas' disease
Physically, Gutierrez felt fine. After months of stress and unanswered questions, she decided to try to move on. But for more than a decade, the heavy knowledge that she carried a potentially deadly parasite hung over her.
Then, late one evening in 2008, her sister phoned, frantic. Chagas' disease was on the news.
Chagas affects an estimated 300,000 people in this country and about 13 million worldwide, chiefly in Latin America, where it is a leading cause of heart failure.
Most carriers in the United States are immigrants who acquired the disease in impoverished areas of Bolivia, Mexico or Central America, where kissing bugs inhabit the cracks and crannies of homes. The bugs nip at faces and lips while people sleep, and drop feces laden with the parasite Trypanosoma cruzi. The parasite can enter the open wound and circulate in the blood, attacking the heart, colon or esophagus.
No one is predicting an epidemic in this country, but disease experts are trying to increase awareness, testing and treatment of Chagas, which can affect sizable swaths of the population, particularly in states like California, with a large Latin American immigrant population.
The effort is needed because the disease can linger undetected for decades, making it difficult to diagnose. Symptoms can be as subtle as an irregular heartbeat or shortness of breath.
Two-thirds of those who become infected never develop complications. But for about 30% of those who contract Chagas' disease, it can cause serious illness, often silently ravaging the heart muscle. Most American physicians don't think to test for it, potentially denying life-saving treatment to thousands.
The disease can trigger strokes and heart failure in people as young as 30. "Your heart just turns into a big, ineffective bag," said cardiologist Sheba Meymandi, director of a Chagas treatment program at Olive View-UCLA Medical Center, the only one of its kind in the nation. About 1 in 100 Latin American immigrants whom the center tests has the disease.
Insects carrying the parasite live throughout the southern half of the U.S. But there have been only nine confirmed cases of people contracting the disease from insects in this country since 1955.
Still, says Meymandi, "This is not an exotic disease. This is a prevalent disease that is treatable in our community. And until people think about it, we're not going to make inroads."
Kissing bugs are suspected of having infected two Los Angeles high school students recently. Meymandi treated the 17-year-olds, who tested positive for Chagas after donating at school blood drives. Neither is of Latin American descent or has ever traveled to the region. But both spend time outdoors mountain biking or golfing, and Meymandi thinks they acquired the disease locally.
Los Angeles County currently has no Chagas public education program, but officials say they might create one if there are increased signs that the disease is being contracted locally.
The federal Centers for Disease Control offers free drugs to treat Chagas. But they receive just 50 or 60 requests a year for the medications, suggesting that thousands of cases go untreated. "Most healthcare providers don't think of Chagas' disease when they see someone who might be at risk," said Susan Montgomery, a CDC epidemiologist.
Gutierrez, 39, of Mission Hills grew up in the small mountain village of El Congo, El Salvador, with no running water or electricity. She lived with her grandmother until age 8, then immigrated to Lynwood with her younger sister to join her parents, who had already fled their homeland's civil war.
Working as an administrative assistant at Universal Studios introduced Gutierrez to the man who became her husband, Daniel, who works there as a landscaper. It was also through her job that she learned of Chagas. She tested positive for the disease during a random screening after a 1997 workplace blood drive.
The Red Cross brochure that Gutierrez received explained that kissing bugs spread the disease in places of extreme poverty, hiding in thatched roofs and cracked walls. Looking at the brochure's photos, Gutierrez flashed back to El Congo: "Oh, my God, that's exactly where I lived."