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In February, Luna donated blood at her high school in Miami, with the goal of helping save others.
“She was very proud to come home and say, ‘I gave blood today,’” her mother, Valerie, said. (The Guardian is not using the mother or daughter’s full names to protect their privacy.)
It turned out, she was not able to save someone else’s life but potentially prevented herself from having serious health issues.
A couple months later, she received a letter from the blood donation company informing her that she could not give blood. She had tested positive for Chagas disease, which is caused by a parasite spread by triatomine bugs, otherwise known as kissing bugs.
Neither Luna nor Valerie had heard about the disease, which is most common in rural parts of Mexico and Central and South America, where their family had traveled.
“If you get a letter that tells you, you have blood cancer, you know what it is. But when you receive a letter and you hear, ‘Oh, your daughter has Chagas,’ … you’re like, oh, what is this?” said Valerie.
Dr Norman Beatty, who has studied the kissing bugs, said that like Valerie and Luna, most people in the US have not heard of Chagas, even though it is not just present south of the border but within the country.
Beatty, an associate professor of medicine at the University of Florida College of Medicine, is part of a group of scientists that authored a new report arguing that the United States should treat Chagas as an endemic disease, meaning that there is a constant or usual prevalence of a disease or infectious agent in a population within a geographic area.
They hope to increase public awareness of Chagas, which while rare, can cause serious health problems.
“My hope is that with more awareness of Chagas, we can build a better infrastructure around helping others understand whether or not they are at risk of this disease” and cause people to think about it similarly to other vector-borne illnesses, like from mosquitoes and ticks, said Beatty. “We need to add kissing bugs to this list.”
Bugs spread the parasite through their droppings, which can infect humans if they enter the body through a cut or via the eyes or mouth, according to the Centers for Disease Control and Prevention.
It can cause symptoms such as fever, fatigue and eyelid swelling in the weeks or months after infection.
Some people, like Luna, do not develop any symptoms – at least initially – but about 20 to 30% of people infected can develop chronic issues later in life such as an enlarged heart and heart failure, or an enlarged esophagus or colon, leading to trouble eating or going to the bathroom.
About 8 million people, including 280,000 in the United States, have the disease, according to the CDC.
It is not a recent arrival to the US. The 1,200-year-old remains of a man buried in south Texas revealed that he had Chagas and an abnormally-enlarged colon, according to a report in the Gastroenterology journal.
More recently, human development in new areas has brought us “closer to the kissing bugs’ natural environment”, Beatty said.
People in at least eight states have been infected with Chagas from local bugs, according to the new report, which was published in the CDC’s Emerging Infectious Diseases journal.
But the fact that it has not been declared endemic to the United States has led to “low awareness and underreporting”, the report states.
A 2010 survey conducted of some American Medical Association providers found that 19% of infectious disease doctors had never heard of Chagas and 27% said they were “not at all confident,” in their knowledge of the disease being up to date.
“If you ask physicians about Chagas, they would think that it is either something transmitted by ticks … or they would say that’s something that doesn’t exist in the US,” said Dr Bernardo Moreno Peniche, a physician and anthropologist who was one of the authors of the report with Beatty.
But Beatty sees people with Chagas every week at a clinic in Florida dedicated to travel medicine and tropical diseases. (Those patients were infected with Chagas in Latin America.)
Beatty said there is a misconception that tests for Chagas are not reliable or available in the United States.
“We have the infrastructure to start screening people who have had exposure to these bugs and who may be in a region where we had known transmission, so we should be thinking about this as kind of routine care,” Beatty said.
After Valerie received the letter about Luna’s infection, she contacted her pediatrician who quickly responded and told them to see an infectious disease doctor.
That physician told them it was likely a “false positive” and ordered additional tests before eventually starting treatment, Valerie said.
Frustrated by the medical care, Valerie sought out a new physician and found Beatty, who prescribed a different anti-parasitic therapy.
Even among people like Luna who are not experiencing any symptoms, such treatment is often recommended, Beatty said.
The goal is to “detect early and treat early to avoid the chronic, often permanent damage that can occur”, Beatty explained.
The treatment took two months, during which Luna experienced side effects like hives and severe swelling in her hands and feet, she said.
While she is finished with the treatment, there is no definitive test to determine whether such patients will develop chronic Chagas symptoms, but it’s less likely, Beatty said.
“I hope the CDC takes it seriously,” Valerie said, “and that we can move forward and have good awareness, so that people want to be tested and get tested and get the treatment they need.”
