Chagas in the first person: “It's not something you have to hide”

Sonia lives in a place in the northwest of the province of Córdoba, in Argentina, and learned that she had Chagas disease at the age of 13 through a screening campaign she had organized by the Somos Tierra peasant movement and is now working as a health promoter. Ruth lives in Quilmes, in El Conurbano, and was diagnosed with the infection after one day she wanted to donate blood and was tested. Today she is 31 years old, and she is a graphic designer and activist to raise awareness and guide others with the infection.

Their stories today show how Chagas disease can be present both in the countryside and in the city. And it is not only found in Argentina. From Latin America and as a result of migration, there are cases of people with Chagas disease in the United States, Canada, Europe, Africa, Asia and Oceania. Today is World Day for Chagas disease, which has between 6 and 7 million people in the world, according to the World Health Organization (WHO).

Sonia, Ruth and Fernanda, who lives in the capital of Córdoba and is an architect, are the protagonists of three short documentaries that were finalists in the Universal Health Coverage category of the “Health for All” Film Festival, organized annually by WHO. You can watch them for free #aquí on the #ProyectoChagas site. The three women were encouraged to tell how they found out they had the disease and how they went ahead and went through prejudice and discrimination. “Chagas is not something you have to hide,” they say.

In the case of Sonia, she has been trained as a health promoter with a feminist perspective and collaborates with other women to find situations in homes or environments that may be situations of risk to health. One of the ways of transmission of infection is through the bites of insects such as kissing bugs. In her particular case, Sonia suspects that it could have been the transmission by that insect because the house she lived in during her childhood had cracks.

Ruth was shocked when she was told that the blood test result was not right. It was 2012 and I had gone to donate blood for a premium. But from the lab where they did the analysis they called her. When they didn't tell her what was going on, the woman got scared, and when they later confirmed that it was Chagas, she felt worse. I had a family member who had died of the infection and Ruth believed that fatality was inevitable. “I'm so sorry, but you have Chagas disease,” a doctor told me and it was like the world was going to end,” Ruth told Infobae.

However, Ruth found clearer answers and hope when attending the Fatala Chabén National Institute of Parasitology. He received drug treatment and is now being checked regularly through blood tests, electrocardiogram and chest plaque. The Chagas couldn't cope with his dreams. Ruth, who is a graphic designer, married a colleague from the university and they are both part of the NGO Hablemos de Chagas. They help guide people who have been discriminated against at work. “Many people don't get the information, even though everything improved with social media,” he said.

“Sometimes people don't know that there are cases of Chagas in cities due to contaminated blood transfusions or mainly mother-to-child transmission. “As a person with Chagas, we cannot remain silent. We are sentient people. Chagas does not discriminate based on age, social class or origin: it is my motto when a person points out something to me that they ignore,” Ruth said.

Meanwhile, Fernanda lives in the capital of Córdoba, and is an architect, passionate about design and photography. He was diagnosed with infection with the parasite that causes Chagas disease when he was 18 years old on university tests, and since then he has lived without noticing symptoms. Today he is 59 years old. He suspects that he may have acquired the infection through a transfusion with contaminated blood during his childhood or when he was in a camp in a rural area of a province in northern Argentina, according to Infobae. Years ago, a social work delayed his income for a year because he had the disease.

“I denied it a lot because before no one talked about Chagas. It was only believed that it was a rural disease and was stigmatized. Now I encouraged myself to talk because I think I would like to see more attention from society on the disease, more prevention and more treatments. Chagas disease is already around the world, but it is ignored,” Fernanda said.

In Argentina, the National Congress passed the Law on the Prevention and Control of Chagas (No. 26,281) in 2007, which made policies to address the disease a priority. However, the organization Civil Association for Equality and Justice (ACIJ), which carried out the #ProyectoChagas campaign with the documentaries together with the group What are we talking about when we talk about Chagas? , warned that the rule is not yet fully complied with.

Fifteen years after its sanction, it remains unregulated, and it generates serious problems in implementing public policies aimed at its prevention, detection and treatment. At the same time, resources destined to prevent and control Chagas are regularly under-implemented. In 2021, the Ministry of Health of the Nation executed only 5% of the budget allocated to it.

In Argentina, an estimated 1.6 million people live with Chagas (20% of the world's population with Chagas). About 1300 girls and boys are born with Chagas per year because of vertical transmission, from pregnant person to daughter during pregnancy. People living with Chagas reside: 66% in cities and 33% in rural areas.

The central region of the country (Córdoba, Buenos Aires, Entre Ríos and Santa Fe) records more than 500 new cases per year, the highest number of vertical Chagas in the country, even more than in endemic provinces.

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