A kiss in the middle of the night
On a sun-drenched Sunday morning in Santa Monica, California, members of the Oaxacan Mexican community gathered at Saint Anne’s Catholic Church to celebrate the Festival of Saint John the Baptist. After a large community mass in an open-air church, a lively Tambora Oaxaqueña brass band kicked off a day of festivities. A quiet Sunday morning turned into a festival of sound and colors with traditional Oaxacan costumes, jarabe dancing, and even a smattering of indigenous languages.
In a shady corner, a group of medical workers had set up three tents. Throughout the day curious participants walked by to chat with the Spanish-speaking medical volunteers. Some took free blood pressure tests but most gravitated over to a large banner featuring a photo of a frightening bug with a tiny head and red and black coloring on its wings.
With the brass band in the background, the volunteers explained that they were there to test for a disease that almost no one in the fair had ever heard of: Chagas. The photos on the posters were of “kissing bugs,” the most common culprit of Chagas disease. Guadalupe Garcia defiantly approached the tents.
“I’m not scared to be diagnosed with this disease, I just want to know. We all will die some way.”
Guadalupe Garcia, as she received a Chagas test
Guadalupe comes from a small town in Oaxaca and remembers seeing kissing bugs everywhere – they are known as chinches in Mexico. They infest the adobe huts common to her region, scattering out from the walls at night. The bugs bite sleeping people, frequently on the lips or face (thus the name “kissing bug”), leaving faeces which contain the parasites that cause Chagas disease. Unknowingly people will itch the bite in their sleep, rubbing the parasite into the wound. But Guadalupe never heard about this seemingly nightmare disease that volunteers were telling her was endemic in her region.
This lack of public information is a common issue in many of the 21 countries where Chagas is endemic, contributing to deep neglect.
Caring for Chagas in Los Angeles
There is only one organization in the United States fully dedicated to providing comprehensive care for people affected by Chagas disease, the Center of Excellence for Chagas Disease (CECD). Housed within the Olive View-UCLA Medical Center in Sylmar, California, the CECD was founded by cardiologist Dr Sheba Meymandi.
The CECD often runs screening fairs in the Los Angeles area. It is one of the only ways to identify people before it’s too late. Chagas is known as a “silent disease,” and most people only experience a fever – if that – when they are first infected. The disease will then remain asymptomatic for years after infection, meaning most people are unaware of their condition. For 30-40% of people infected, the disease progresses to a late chronic stage. Of these, most will suffer cardiac damage from the parasites in their heart tissue, often leading to sudden death.
In addition to bites from the kissing bug, the disease can be transmitted from mother to baby, through food contaminated by kissing bugs, or through blood transfusions (the US now screens blood donations for Chagas disease).
The CECD is running today’s screening and Dr Meymandi is there, assisted by Dr Salvador Hernandez, Project Manager of the CECD and coordinator of the community outreach. Drs Meymandi and Hernandez are some of the only health professionals in the country that know how to treat this disease.
“We need to make the medical community aware that Chagas disease is prevalent in the United States. It should not be seen as an exotic disease. We need to be thinking about it when we see patients and we need to be screening folks that come from at-risk areas – if we catch the disease early and treat you can prevent the onset of the complications associated with the disease.”
Dr Sheba Meymandi
Citations
- “Voices of Chagas in the USA.” DNDi Stories, 1 May 2019, stories.dndi.org/chagas-in-los-angeles/index.html.
- “dndi_chagas_la_june2017_79-2560×1706” by Angela Boatwright https://stories.dndi.org/chagas-in-los-angeles/index.html
- “Dr Sheba Meymandi” by Angela Boatwright https://stories.dndi.org/chagas-in-los-angeles/index.html