Chagas: the Hidden Word... and a Second Chance

Chagas: from the hidden word to the hope of science. A reflection on global health, the weight of silence, and the power of second chances.

Reading time: 5 minutes.

[This excerpt is from the book “Graphic Humour Against Forgetting” (Lunwerg Editores, Grupo Planeta), which features the illustrations created for the Note-olvides campaign. Leonardo Padura and El Gran Wyoming wrote the foreword and epilogue respectively.]

The word “Chagas” was first a night and a child. A night in 2005, in Managua, Nicaragua. A 9-year-old child in his mother's arms.

His mother lays him in a casket and places beside him, one by one, the toys he had kept since he was little: stuffed animals, a small baseball, and something I cannot identify. Belongings of his history, companions for the passage, with which the pharaohs' children were also buried. His mother is a doctor and a friend. Her son had undergone emergency surgery for appendicitis, but his heart could not take it. They said he had a previous condition that went undetected. Another doctor said: “It is possible he had Chagas.” 30% of those who contract it can develop severe heart problems, among other pathologies. Occasionally, it can cause sudden death.

I have never seen a pain more silent, more invisible, than that of a mother laying toys beside her child's body

The boy used to spend weekends at a small family farm in an endemic area, inhabited by kissing bugs, the vector (triatomine) that transmits the parasite. Since that night, I tell myself that I have never seen a pain more silent, more invisible, than that of a mother laying toys beside her child's body. And I relive it in every image of war, natural disaster, or any other tragedy.

Two words that weigh like stones

Since its discovery by the Brazilian doctor who gave it its name, more than a hundred years ago, Chagas has been described in two words that weigh like stones: invisible-silent. Because its symptoms often go unnoticed until it is too late. A treacherous disease. And somewhat strange. Many other people live with the infection and are never affected. It is as if it chose its victims by some unknown chance. The insect, which inhabits rural and urban areas in 21 Latin American countries and the southern United States, usually bites at night; it defecates over the bite, introducing the infection into the body, especially if the person accidentally scratches it. Other times it infects food and drinks, as happens in some Amazonian regions.

Its symptoms often go unnoticed until it is too late. A treacherous disease. And somewhat strange. Many other people live with the infection and are never affected

In Europe, there are tens of thousands of people living with Chagas, with Spain leading the way due to migratory movements. But beyond insect transmission, it can also be contracted congenitally, through laboratory accidents, blood transfusions, or organ transplants that have not been screened.

Fortunately, there are treatments and diagnostics. They are not perfect, but they work, especially at early ages and when the infection is detected in time. However, most do not receive them.

"This girl is not going to die of Chagas on my watch"

When I started working at Doctors Without Borders (MSF), I learned more about this disease, which is the metaphor for neglect and loneliness in Latin America. And later, for me, Chagas became a woman. Another woman and mother.

I met her in Mexico, seven years ago. Her name is Elvira. Her daughter, the only girl of three siblings, was diagnosed with Chagas at eighteen, just as she was deciding what to study. The doctors who treated her lacked knowledge about the disease and told her not to make many plans for the future. The young woman did not back down and trusted her mother. So Elvira moved heaven and earth; she searched the internet until she contacted an Argentine doctor who guided her through the process. “This girl is not going to die of Chagas on my watch,” she promised herself. Today, Yaya, her daughter, is a lawyer in her thirties, healthy and infection-free after completing her treatment.

The young woman did not back down and trusted her mother. Today she is a lawyer in her thirties, healthy and infection-free after completing her treatment

I am not a doctor or a scientist, but an intruder in global health coming from communication and philology—from the world of words. But I have worked to translate the complicated words of science into a closer language. It is like searching for hidden words. For this, I have also collaborated with the Global Chagas Coalition, alongside ISGlobal. And that is why, for me, Chagas now also means “the second chance.” After more than a hundred years of patients, researchers, and clinicians fighting the disease, we know that it can be eliminated as a public health problem. And that allows us to dream of the magic of scientific work. An hypothesis is, after all, the formulation of a hope.

García Márquez, in his Nobel Prize for Literature speech, claimed the right to believe “that it is not yet too late to engage in the creation of a new utopia of life, where no one can decide for others even how they die, and where the races condemned to one hundred years of solitude have, at last and forever, a second chance on earth.”

I believe in that. And when I don’t, I read it again, to remember what is kept there, hidden, without being caught by silence or oblivion.