Emiliana Rodriguez recalls watching her classmates play soccer one evening in her early years when one of the players rashly fell to the ground dead. Without knowing the reason, Bolivian-born Rodrguez experienced a severe phobia of the night, expecting the appearance of Chagas, a silent, lethal attacker known as the “monster” who only appears at night.
Chagas is a particular type of threat—an “unspoken and hushed ailment”—transmitted by midnight insects that infect around 8 million people every year. Sadly, Rodrguez’s companion was one of the 12,000 people who die from this illness each year.
At the age of 42, Emiliana Rodríguez relocated from Bolivia to Barcelona 27 years ago, only to discover that she couldn’t elude the grasp of Chagas, a condition she refers to as a “monster.”
“Typically, fear would creep in during the night. There were instances when I couldn’t sleep,” she expressed. “I dreaded falling asleep and not waking up again.”
Eight years ago, while expecting her first child, Rodríguez underwent several tests that unveiled her status as a carrier of Chagas. “I was overcome with shock and vividly recalled the stories my family members had shared about individuals succumbing to the disease,” she recounted, her friend’s demise also fresh in her mind. “I couldn’t help but wonder, ‘What will become of my baby?’”
However, Rodríguez pursued treatment to prevent the transmission of the parasite to her unborn child. As a result, her baby girl tested negative for the disease upon birth.
On the other hand, Elvira Idalia Hernández Cuevas, residing in Mexico, had never encountered the concept of Chagas until her 18 years old was diagnosed with this concealed assailant.
At the age of 18, Idalia found herself in her hometown near Veracruz, Mexico, donating blood. During the screening of her sample, it was revealed that she had tested positive for Chagas—a disease caused by blood-sucking parasites known as triatomine bugs, often referred to as kissing or vampire bugs.
“I had no prior knowledge of Chagas, so I took to the internet to research it,” Hernández revealed during an interview with The Guardian. “I was filled with fear when I discovered that it was referred to as a silent killer. I felt lost, not knowing what steps to take or where to seek help.”
She is not alone in her lack of awareness about this vectorborne disease triggered by these troublesome insects. Numerous individuals remain uninformed about the illness caused by these bothersome pests.
The disease known as Chagas is named in honor of Carlos Ribeiro Justiniano Chagas, a Brazilian physician and scientist who first identified a human case in 1909. Throughout the past few decades, it has become widely recognized that Chagas disease is prevalent not only in Latin America but also in North America, Europe, Japan, and Australia.
Kissing bugs primarily inhabit the walls of economically disadvantaged residences located in rural or suburban regions and exhibit heightened activity during the night when people are asleep. These bugs transmit the T. cruzi infection by biting either an animal or a human and subsequently defecating on the individual’s skin. In some instances, the victim may inadvertently scratch the affected area, causing the skin to break, or unknowingly transfer the bug’s feces into their eyes or mouth.
As per the Centers for Disease Control and Prevention (CDC), around 8 million individuals in Mexico, Central America, and South America, and approximately 6 to 7 million worldwide according to the World Health Organization (WHO), are affected by Chagas disease, with the majority unaware of their infection. If left untreated, this lifelong infection can have fatal consequences. Each year, approximately 12,000 people succumb to Chagas, making it the deadliest parasitic disease in Latin America, surpassing even malaria, as reported by The Guardian.
While these bugs have been detected in the United States, with approximately 300,000 people being infected, the disease is not classified as endemic in the country.
Although some individuals may remain asymptomatic, the Centers for Disease Control and Prevention (CDC) states that after several decades, 20 to 30% of infected individuals may experience cardiac complications that can potentially be fatal, or gastrointestinal complications that can cause significant discomfort.
Furthermore, the global rate of detecting cases is merely 10%, making the challenges of treatment and prevention considerably arduous.
Seeking assistance, Hernández and her daughter Idalia sought help from multiple doctors who possessed minimal knowledge, if any, about Chagas or its treatment. Hernández expressed her surprise, fear, and sorrow upon realizing that her daughter’s life might be at stake. Most distressingly, she struggled to obtain trustworthy information, intensifying her anxiety.
After receiving assistance from a family member employed in the healthcare field, Idalia finally obtained the necessary treatment she required.
“In Mexico, the authorities claim that the number of people affected by Chagas is limited and that it is under control, but that is not the reality,” Hernández asserts. “Medical professionals receive no training on the subject and often mistake Chagas for other heart diseases. The majority of them are unaware that Chagas exists in Mexico.”
Chagas is categorized as a neglected tropical disease by the World Health Organization (WHO), signifying that it does not receive adequate attention on the global health policy agenda.
The treatment for Chagas disease
According to Colin Forsyth, a research manager at the Drugs for Neglected Diseases Initiative (DNDi), Chagas disease is often overlooked due to its concealed nature within the body for an extended period. He explained that the initial phase of the infection is asymptomatic, which contributes to its neglected status.
Regarding the marginalized populations, Forsyth further noted, “Those affected individuals lack the influence to shape healthcare policies. There is a combination of biological and social factors that contribute to keeping the disease hidden.”
However, as Chagas disease spreads to different continents, its recognition is growing. It is now acknowledged that the disease can be transmitted through blood transfusions, organ transplants, and from mother to baby during pregnancy or childbirth.
Professor David Moore, a consultant at the Hospital for Tropical Diseases in London, established the Chagas Hub, a facility based in the UK. Its principal objective is to increase the number of individuals undergoing testing and receiving treatment for Chagas disease. Additionally, the hub aims to effectively manage the risk of transmission, particularly from mother to child, within the UK context, as stated by Professor Moore.
According to Moore, the advancement in eradicating Chagas disease is exceedingly slow, progressing at a glacial pace. Considering the goal set by the World Health Organization (WHO) for disease elimination by 2030, Moore expressed doubt, stating, “I find it highly unlikely that we will even come close to achieving it by 2030.”
The treatment options for Chagas disease include two medications, benznidazole and nifurtimox, both of which have been available on the market for over 50 years. However, according to Moore, these treatments are considered “toxic, unpleasant, and not particularly effective.”
While these medications can potentially cure Chagas disease in infants, there is no guarantee that they can effectively prevent or slow down disease progression in adults.
Regarding the adverse reactions, Rodríguez recalls experiencing symptoms such as hives, dizziness, and nausea. Despite these challenges, she successfully completed the treatment and now undergoes annual check-ups.
Moore emphasizes the importance of developing more effective medications to combat the spread of Chagas disease. However, he notes that pharmaceutical companies currently lack the financial incentive to invest in research and development for Chagas treatment.
Until there is a greater market demand that incentivizes the development of additional treatments, Hernández has taken it upon herself to amplify awareness of the silent disease. She serves as the president of the International Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS).
If you come across a triatomine bug, what steps should you take?
In the meantime, Rodríguez, residing in Spain, is actively combatting the “monster” by raising awareness about Chagas through a campaign organized by the Barcelona Institute for Global Health.
Rodríguez expresses her frustration with the prevailing silence surrounding Chagas and emphasizes her desire for open discussions about the disease. Her ultimate goal is to encourage people to seek testing and treatment for Chagas, ensuring that it receives the attention and action it deserves.
Their voices are being acknowledged and recognized.
In order to commemorate the discovery of the first human case by Carlos in 1909, the World Health Organization (WHO) designated April 14 as World Chagas Disease Day. The WHO has outlined global targets and milestones for the prevention, control, elimination, and eradication of various diseases and disease groups, including Chagas, by 2030.
To avoid potential infestations, the Centers for Disease Control and Prevention (CDC) advises the following preventive measures:
- Close gaps and seal cracks in windows, walls, doors, and roofs.
- Remove wood, brush, and rock piles located near your house.
- Install screens on doors and windows, and repair any damaged areas.
- Seal openings and cracks that lead to the attic, crawl spaces, and the exterior of your house.
- Keep pets indoors, especially during nighttime.
- Maintain cleanliness in your house and regularly inspect both indoor and outdoor areas where pets rest for the presence of bugs.
If you encounter a kissing bug, it is recommended by the Centers for Disease Control and Prevention (CDC) to refrain from crushing it. Instead, it is advised to handle the bug with caution, placing it in a container and filling the container with rubbing alcohol or freezing it in water.
Subsequently, it is advisable to bring the container containing the bug to either your local health department or a university laboratory for identification.
The fact that these bugs reside within the walls of homes can be quite alarming, evoking memories of childhood horror stories cautioning against the presence of monsters lurking within the walls.
We genuinely anticipate that the World Health Organization (WHO) fulfills its commitment to eradicating Chagas disease and other Neglected Tropical Diseases.
We kindly request you to share this story and join us in raising awareness about this silent disease!