revealing the neglect: chagas disease

Yerko’s Story

Yerko, a father of three, loved playing the guitar and singing at church or with his family. He grew up in Bolivia in the small community of El Forestal in the east of the country. As a child, he and his family lived in a house constructed in the traditional Bolivian way, with walls made of adobe bricks and a roof of palm leaves. The house was shaded by palm trees and stayed very cool in the hot tropical sun.

However, hidden inside the cracks and crevices in the walls and roof were insects known locally as vinchucas, or kissing bugs in English. These insects came out at night to drink the blood of Yerko and his family while they slept.

The bites are painless, but they can transmit the parasitical disease Chagas in an unusual way. Sometimes the kissing bugs defecate near a bite while they drink blood. The feces harbor the parasite which causes Chagas disease. When the sleeping victim unconsciously scratches the bite, they can introduce the infected feces into their bloodstream.

They may not feel sick until decades later.

A "kissing bug"

When he was eight years old, Yerko and his family moved to the large city of Santa Cruz, a two-hour drive from El Forestal. Yerko did not realize it, because he felt perfectly fine, but he already had Chagas disease.

As a young man he got married and took a job working as a clerk in a pharmacy. Yerko liked helping others, and his dream was to one day become a pharmacist himself. He and his wife Raquel had three children: two boys, Yeison and Yordy, and a daughter, Yessica. The family was happy and enjoyed getting together with relatives for cookouts, where Yerko would play the guitar and sing. He also coordinated the music program at a local church. From an early age his sons followed in his footsteps and learned to play instruments as well. They would accompany Yerko when he sang at church.

Yerko and Raquel

“He was very devout and we would hold gatherings and he would also compose songs that we would always sing together,” recalls Raquel.

Things were going well enough that Yerko realized his dream of enrolling in pharmacy school. However, shortly afterwards, he started to feel sick. He became very tired, developed a persistent cough, and had dizzy spells. He even had to be hospitalized, but the doctors could not figure out what was wrong with him. Yerko worked hard to finish his pharmacy studies so he could become a pharmacist, but his health continued to deteriorate.

Finally, the doctors realized Yerko had advanced Chagas disease. His heart had enlarged and had difficulty pumping blood. His face and legs swelled, and he was always short of breath. It was too late to reverse the damage. When it was time to take his very last exam for pharmacy school, his son Yeison had to support him so he could walk to his desk.

Sadly, Yerko never became a pharmacist.

He died from Chagas disease at age 44, when his two youngest children, Yordy and Yessica, were still in school. His passing left a huge void in his family and community.

“Everyone knew him as a good husband and father,” said Raquel.

Yerko's family

Chagas disease is caused by the protozoan Trypanosoma cruzi, which is mainly transmitted by kissing bugs, but also through transfusion, organ transplant, from mother-to-child during pregnancy, and through eating food contaminated by kissing bugs. Throughout the world, over six million people have Chagas disease, but less than one percent have been diagnosed or treated. About 30-40% will develop advanced complications, mainly affecting the heart, as in Yerko’s case.

Chagas is a silent and hidden disease. Because it does not produce serious symptoms for many years, most people do not realize they have the infection. However, by the time these symptoms are felt, it may be too late for effective treatment. Chagas disease kills over 7,000 people a year, and many, like Yerko, are in the prime of their lives.

People who grew up in a rural area of Latin America or who recall being bitten by kissing bugs may be at risk. It is important for everyone at risk to get tested, even if they feel perfectly fine. If Chagas disease is detected in time, treatment can prevent or delay the onset of advanced complications.

Yerko wanted to become a pharmacist to help people in need, but became a victim of Chagas disease. Early diagnosis and treatment could have saved his life.

To learn more about our work to develop new drugs for this neglected disease, click here.

Please have a look at Yerko’s story, animated below, based on photographs provided by his family.

 

This story is part of DNDi's "Revealing the Neglect" series, where we are using drawings to tell the stories of patients that a photo can't tell. Stay tuned for more stories!