InfoChagas, a Channel that Responds to People Affected by Chagas

InfoChagas is more than an information and consultation website for people and families affected by Chagas disease. It has become an alternative for those affected who have not found effective answers in their own countries. An expert provides them with personalised support and the closest possible care is sought in collaboration with the contacts we have in the different countries. However, the most valuable aspect of this portal is that affected people write down their stories to help others.

Elizabeth Posada is an anthropologist and collaborates with the Global Chagas Coalition.

After several days of exchanging messages with Mrs R, via the InfoChagas website, to answer the questions she had as a Chagas disease sufferer, I came across a genuine offer that can only come from someone who understands the suffering of a disease that is becoming more visible every day and who wants to prevent others from suffering from it: to write about her own experience in order to bring comfort and light to others.

This is not the first time we have received such an offer, but R encouraged us to write and share the doubts and fears that accompany people with a positive diagnosis of Trypanosoma cruzi or who already have cardiac or digestive involvement.

What is Chagas disease

It is estimated that there are more than 70 million people in the Americas who live in Chagas-exposed areas and are at risk of contracting the disease. Just over 6 million people are already infected. There are about 30,000 new cases per year due to vector-borne transmission and approximately 9,000 due to congenital transmission. Up to 30% of people who become infected have heart disorders and 10% have digestive, neurological or mixed disorders. In addition, only 7% of people with the disease have been diagnosed and only 1% receive etiological treatment. Available data indicate that there are about 12,000 deaths related to this infection each year.

Cardiac involvement is perhaps the best known. Many of those who develop cardiac involvement have acquaintances or family members who have died and inevitably think of that outcome. And although they may live a normal life, the possibility of needing a pacemaker or even a transplant often looms on the horizon - solutions whose cost and accessibility constitute an almost insurmountable barrier in developing countries in Latin America.

It is estimated that there are more than 70 million people in the Americas who live in Chagas-exposed areas and are at risk of contracting the disease

Digestive disorders caused by Chagas disease, although disabling, have a limited presence in the forums. At InfoChagas we receive fewer questions about them, but when people write, they share their pain and anxiety, and ask what they can do to prevent others from suffering. They use expressions such as "a slow death" from not being able to defecate or eat, from personal and family fatigue, and from the financial ruin of finding effective treatment.

A man from Bolivia and a woman from Guatemala with Chagas disease

Mr. I does not know R. He lives in Bolivia and she lives in Guatemala. Both came to InfoChagas through the web or Youtube channels, which are connected, in search of an answer. They are thousands of kilometres apart, but they share a rosary of symptoms that start with coughing, lack of appetite, vomiting, weight loss and excessive fatigue. They began having trouble defecating. At first, they managed every three days on average, then every week and so on, sometimes for three weeks without a bowel movement. Imagine such a situation.

Photo: UN Women / Ryan Brown

As if having to undergo endoscopies, colonoscopies and surgeries were not enough, these patients are also faced with losing their jobs and material possessions; being forced to sell their house, move to a rented room and, at the end of the day, listening quietly to tired friends and family muttering that perhaps it is a mental health problem.

We know that the cases that reach Infochagas are just the tip of the iceberg of many others who have not yet received a response and who become chronic patients, not only because of a disease, but because the health system has failed them or has not been able to reach them where they live

She in Guatemala and he in Bolivia, after a long pilgrimage through referral health centres, public hospitals, public and private doctors and specialists, they met with a professional who requested a serology for Chagas and now they have a positive diagnosis for Trypanosoma cruzi. They know that part of their digestive problems are due to Chagas disease. The next step is to ensure that they have the best ongoing care for their chronic conditions.

The testimonies of Chagas help us to understand

These may seem extreme, but we know that the cases that reach InfoChagas are just the tip of the iceberg of many others who have not yet received a response and who become chronic patients, not only because of a disease, but because the health system has failed them or has not been able to reach them where they live.

In a first review of the consultations carried out since 2014, we have been able to observe that the first reason for consultation of the people affected is related to information or misinformation regarding access to treatment, followed by the forms of transmission or the direct request for help in accessing health systems.

The testimonies help us understand how the interaction between affected people and their health systems takes place, with a strong conclusion: more effort is needed to provide information, education and communication at all levels in affected countries

The testimonies help us understand how the interaction between affected people and their health systems takes place, with a strong conclusion: more effort is needed to provide information, education and communication at all levels in affected countries. There is a need to understand the complexity of Chagas disease, demystify some concepts and overcome barriers.

To be able to help, to share experiences

The people we interact with daily from InfoChagas, first online and then via WhatsApp, remind us of the stories of pain, struggle and hope behind each statistic, as well as the potential of apps and social networks to seek and find answers for those who have searched for so long, like Mrs R and Mr L.

Mrs R, from her native Guatemala, says: "I would like to be able to help other people, but I don't know how". And Mr. I from Bolivia: "Here, I share my suffering so that no one suffers what I am suffering".