When Emiliana Rodriguez was a little girl in Bolivia, she remembers watching her friends play soccer at night. Suddenly, one of the players collapsed and died. This moment stuck with her, and she developed a fear of the dark and the “monster” called Chagas, a disease she was told only appeared at night.
Chagas disease is a sneaky illness spread by insects that come out at night. It’s known as the “silent and silenced disease,” affecting up to 8 million people each year and causing around 12,000 deaths annually.
At 42 years old, Emiliana discovered she had Chagas after moving to Barcelona from Bolivia 27 years ago. “Night is when the fear generally struck. I didn’t always sleep well,” she admitted. “I was worried that I wouldn’t wake up from my sleep.”
When Emiliana was eight and pregnant with her first child, tests showed she carried the Chagas gene. Remembering her friend’s sudden death, she was terrified. “I wondered, ‘What will happen to my baby?’” she said.
She was given medicine to prevent passing the parasite to her unborn child, and thankfully, her daughter was born free of the disease.
Elvira Idalia Hernández Cuevas, from Veracruz, Mexico, also had a frightening encounter with Chagas. At 18, she tested positive for the disease after donating blood. “I started to research Chagas on the internet because I had never heard of it,” she said.
“When I read that it was a silent murderer, I became really afraid. I had no idea where to go or what to do.”
Many people don’t know about Chagas and the dangers of the bugs that spread it. The disease is named after Carlos Ribeiro Justiniano Chagas, a Brazilian doctor who discovered it in 1909. Over the years, Chagas has been reported in Europe, Japan, Australia, Latin America, and North America.
Kissing bugs, which carry the disease, are mostly found in rural or suburban low-income areas. These bugs bite at night and leave behind infected feces on the skin. When people scratch the bite, they spread the infection into their eyes or mouth.
The World Health Organization (WHO) estimates that 6 to 7 million people worldwide have Chagas disease, but most don’t know they’re infected. The disease can be deadly if not treated. Each year, Chagas kills over 12,000 people, more than any other parasitic disease in Latin America, including malaria.
In the United States, about 300,000 people are infected with Chagas, though it isn’t considered widespread there. Most people don’t show symptoms, but 20 to 30 percent may develop serious heart or digestive problems later in life.
Only 10 percent of Chagas cases are diagnosed, making prevention and treatment very difficult. Hernández and her daughter Idalia visited many doctors, but none knew how to handle Chagas.
“I was taken aback, terrified, and depressed because I believed my kid was going to pass away,” Hernández said. “Above all, I was more anxious because I was unable to locate any trustworthy information.”
Eventually, with help from a family member in the medical field, Idalia got the treatment she needed.
Hernández argues that the Mexican government downplays the disease. “Medical practitioners misdiagnose Chagas disease for other heart conditions because they lack knowledge in this area. Most people are unaware that there is Chagas in Mexico.”
Chagas is classified as a neglected tropical disease by the WHO, meaning it doesn’t get enough attention in global health policies. Colin Forsyth from the Drugs for Neglected Diseases Initiative (DNDi) explains that the disease is overlooked because it remains hidden in the body for so long without symptoms.
Forsyth adds, “The people affected just don’t have the power to influence healthcare policy,” highlighting that it mostly affects impoverished communities.
Chagas is gaining more recognition as it spreads to other continents and can be passed from mother to child during pregnancy or childbirth, as well as through organ and blood transfusions.
The Chagas Hub, founded by Professor David Moore in the UK, aims to increase testing and treatment and manage the risk of transmission, especially from mother to child. However, progress toward eradicating the disease by 2030 is slow. “I can’t imagine that we’ll be remotely close by 2030,” Moore says.
The two main drugs for Chagas, benznidazole and nifurtimox, have been around for over 50 years but are not very effective and have harsh side effects. Rodriguez remembers experiencing dizziness, nausea, and hives during her treatment, but she gets checked annually now.
Moore emphasizes the need for better drugs, but pharmaceutical companies are not financially motivated to develop them.
As president of the International Federation of Associations of People Affected by Chagas (FINDECHAGAS), Hernández is determined to raise awareness about the disease. In Spain, Rodriguez fights the “monster” as part of a campaign by the Barcelona Institute for Global Health.
“I’m tired of hearing nothing at all,” Rodriguez declares. “I want Chagas to be discussed and made public. I’m in favor of testing and therapy for individuals.”
Their voices are making a difference. The WHO established World Chagas Disease Day on April 14, 1909, to honor the discovery of the first human case. The WHO aims to prevent, control, eliminate, and eradicate various diseases, including Chagas, by 2030.
To prevent kissing bug infestations, the CDC recommends sealing gaps around doors, windows, walls, and roofs, removing piles of rocks, wood, and brush near homes, installing screens on windows and doors, keeping pets indoors at night, and regularly checking for bugs.
If you find a kissing bug, the CDC advises not to crush it. Instead, place it in a jar with rubbing alcohol or freeze it, then take it to a lab or local health authority for identification.
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