GLOSSARY OF IMPORTANT TERMS RELATED TO CHAGAS DISEASE
A proposal under permanent construction
“Definitions are a powerful tool for thought and action.”(Else Øyen, 2009)
In order to understand Chagas as a complex socio-environmental health problem, we believe it is necessary to have definitions that are revised critically by multiple disciplines and by as many parties involved with the issue as possible.
WHAT IS THE BEATCHAGAS GLOSSARY?
The aim of this glossary is to widen the range of available definitions of concepts and central aspects of the Chagas problem. These definitions should apply–with a critical mindset–to both the academic field and the practicalities of decision-making, education, and communication related to the many points of view that make up the topic.
Because it is necessary to understand that:
-At least 6 million people in the world are infected with the parasite that causes Chagas disease (WHO, 2013)
-It is estimated that only 10% of people that have Chagas disease are aware that they have it and only 1% have access to treatment (Rodríguez Coura & Albajar Viñas, 2010)
-A huge percentage of these people suffer the social consequences of the disease in terms of stigma, discrimination, and fear caused by a fragmented, insufficient, and outdated approach to the problem (Sanmartino et al., 2019)
Some of these complex facts are the result, in large part, of the fact that we are faced with an issue that is not discussed enough or in an appropriate way. Because of this, we agree that stopping and reflecting on the words that we use to discuss issues is a necessary exercise. When discussing a sensitive topic, our words shape the content: reinforcing discourse that we wish to question or helping to transform it. (Sanmartino, 2015).
Because of this, we put forth this glossary as a tool to encourage reflection about issues that are raised and as a baseline approach, a toe in the water of a dynamic resource under permanent construction.
In this section we aim to develop a collaborative “live” glossary because we are aware that some terms will be reformulated over time, others will spark open debates, and even more will be continuously updated as our knowledge and discourse of the subject advances.
In some cases we will give definitions, and in others we will give critical revisions of terms that need to be reconsidered. This is a dynamic proposal in which everyone is invited to participate through the forms below; the Technical Group will be responsible for reviewing and organizing entries and updating existing definitions of terms and concepts.
Technical Group 6 (TG6-IEC Chagas) is part of the Chagas Disease Control Program, Department of Control of Neglected Tropical Diseases, WHO, to make technical contributions in the areas of Information, Education and Communication (IEC) regarding the problem of Chagas. The group is composed of professionals from different disciplines and geographical origins, with wide and varied experience with the subject.
DEFINITIONS ARE A POWERFUL TOOL FOR THOUGHT AND ACTION.
WOULD YOU LIKE TO CONTRIBUTE TO THE GLOSSARY?
In accordance with our proposal in the previous section, we suggest the use of the term “the Chagas problem” or simply “Chagas” (as long as this doesn’t cause semantic confusion) instead of “Chagas disease” as a blanket term. We prefer to reserve the term “Chagas disease” for specific situations in which we are discussing changes in the health of people who are carriers of the parasite Trypanosoma cruzi. We believe Chagas to be much more than a disease, not just because of the multidimensionality and complexity that define it, but also because most people who test positive as carriers of the parasite do not develop the disease itself. In this same vein, we also propose leaving behind the expression “mal de Chagas” because the word “mal” (Spanish for both “illness” and “bad”) implies a clearly negative value judgment that perpetuates stigmatization and discrimination toward affected people. In addition, thinking of Chagas as a “mal” carries an implicit conceptual error–illnesses are habitually spoken of this way when there are many fundamental aspects about them that are unknown, such as the transmission methods or the causal agent. This is not the case with Chagas; causes, treatments, and plenty of other relevant information is well-known and established.
Given the extensive use of the term “Chagasic” to refer to people who have Chagas, we should ask ourselves if it would be considered normal to use the words “cancerous” or “tuberculous” to refer to people who are affected by other health problems that are just as sensitive as Chagas. Although we know it requires us to use more words, we recommend the use of the terms “people living with Chagas disease” if they have clinical symptoms attributed to T. cruzi, and “people with Chagas” or “people affected by Chagas” if they do not have symptoms or if their symptomatic status is unknown.
For this point in particular, it is important to gain insight from the associations that make up the movement of people affected by Chagas disease. Many of these are part of the Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS) and were born from very small groups of people living directly or indirectly with the disease. For quite some time, many of these people have gradually changed from patients to activists, explicitly questioning the word “Chagasic'' and making their voices heard while fighting for a greater role in public spaces.
- Communication / Communication in Healthcare
- Education /Education in healthcare
- Information / Information in healthcare
Isaza Nieto P. (2015). Glosario de epidemiología. Academia Nacional de Medicina de Colombia-Capitulo Tolima. www.academiamedicinatolima.org/uploads/7/1/5/9/71599273/glosario_epidemiologia_pdf_1.pdf
Øyen E. (2009). Presentando el Glosario. En: Pobreza: Un glosario internacional. Eds.: Spicker P, Alvarez Leguizamón S, Gordon D. Buenos Aires: CLACSO, 2009. biblioteca.clacso.edu.ar/ar/libros/clacso/crop/glosario/03oyen.pdf
Rodríguez Coura J, Albajar Viñas P. (2010). Chagas disease: a new worldwide challenge. Nature 465, supl. 7301, pp. s6-s7.
Sanmartino M, Avaria Saavedra A, Gómez i Prat J, Albajar-Viñas P. (2019). Chagas and health promotion: dialogue inspired by the Curitiba Statement. Health Promotion International Vol. 34, Issue Supplement_1:i82–i91.
Sanmartino M. (Coordinación). (2015). Hablamos de Chagas. Aportes para (re) pensar la problemática con una mirada integral. Contenidos: Amieva C, Balsalobre A, Carrillo C, Marti G, Medone P, Mordeglia C, Reche VA, Sanmartino M, Scazzola MS. Buenos Aires: CONICET.
World Health Organization (WHO). (2013) Sustaining the Drive to Overcome the Global Impact of Neglected Tropical Diseases. Second WHO Report on Neglected Tropical Diseases, WHO/HTM/NTD/2013.1. WHO, Genève.