Health tips for people with chronic phase of Chagas disease

What do you need to bear in mind if you have chronic phase of Chagas disease or you are caring for someone who does?

Chagas disease is an infectious, usually chronic, tropical disease caused by the parasite Trypanosoma cruzi. People can become infected through the faeces of an infected insect, a triatomine, also known as conenose bugs, kissing bugs, assassin bugs or vampire bugs, depending on the country.

It can also be transmitted in other ways:

• Blood transfusions
• Organ transplants from infected donors
• During childbirth from an infected mother.

Transmission caused by the insect only takes places in Central and South America, but the other ways, due to the migratory movements of infected people, may occur in other corners of the planet. The illness can be prevented.

Although Chagas disease affects between eight and ten million people around the world, today it is not very well known. According to the World Health Organization, it is one of 17 forgotten and neglected diseases.

In somewhere like Spain this illness has different health education needs than in countries where it is endemic. Familiarity, awareness, removing stigmas and visibility of the illness are therefore essential instruments in health education about Chagas disease.

Undiagnosed people

It is calculated that currently less than 10% of infected people know that they have the disease.

Who can be infected?

• People from countries in Central or South America (except the Caribbean) who have lived there or visited (especially rural areas and adobe brick houses).
• The children of women diagnosed with the disease.
• People with an affected person in their immediate family.

How do you know if you are infected?

• Diagnosis of Chagas disease is done through specific blood tests (serology).

What do you need to do?

• Conduct diagnostic tests on people at risk. Especially women of a fertile age, pregnant women and infants.
• Raise awareness and encourage people close to them to get tested.
• When returning from a country with a risk of contracting the disease, preventive measures should be taken.

People who have been diagnosed

Chagas disease is characterised, first of all, by an acute phase during which treatment is effective and it can be cured. In most cases, however, it evolves to become a chronic disease and, as such, requires control and monitoring for life.

More than half of infected people show no symptoms, but three out of ten will suffer heart problems and one in every ten digestive problems (years after having contracted the infection). In these cases, the process is initially asymptomatic, so that without sufficient treatment or monitoring the illness could manifest itself suddenly and cause irreversible damage or even sudden death.

What effects does the disease have?

• Chronic Chagas disease with no effect: the person is infected, but they have no symptoms or affected organs.
• Chronic Chagas heart disease: the disease affects the heart.
• Chronic Chagas gastrointestinal disease: the disease affects the organs in the digestive system (oesophagus and/or large intestines).

What are the warning signs?

• Tiredness and breathlessness when doing an activity that the person would have been able to carry out normally before.
• Changes in heart rate (skipping, going faster or slower than normal).
• Dizziness or loss of consciousness.
• Stabbing pain in the chest area.
• Fluid retention (swelling or oedemas) in the feet and/or legs.
• Changes in bowel movements (constipation).
• Difficulty or pain in swallowing solid foods, such as bread or rice.

What do you need to do?

• Have healthy habits and lifestyle (healthy and balanced diet, exercise and no toxic habits).
• Attend a yearly follow-up and monitoring review with the doctor.
• Follow instructions given by medical personnel (doctors and nurses).
• Recognise and identify the warning signs and inform medical personnel responsible for monitoring.
• Acquire appropriate tools and attitudes to overcome the stigmas associated with the disease.
• Acquire knowledge about the disease to understand it and share knowledge and experience with other people in order to promote the multiplier effect of knowledge in a family and group context. 

What effect does it have from a psychological point of view?

Chagas disease  is often accompanied by emotions and feelings of guilt, impotence and fear. Questions such as: “Why me?”, “What do I do now?” and “Does Chagas mean I’m going to die?” are common in people who have been diagnosed.

What do you need to know?

• These feelings and emotions are reactions that show you are adapting to accepting a life shared with a chronic illness such as Chagas disease.
• They are normal reactions when faced with an unknown change.

What do you need to do?

• You do not need to fight against the disease, but learn to live with it.
• Avoid isolating yourself.
• It is important to share experiences, feelings and concerns with people around you and with healthcare professionals (doctors, nurses, etc.).
• Joining a group of other people with the disease may also help.
• It is important to try to increase your self-esteem and self-confidence.
• Try to improve your self-esteem.
• Work on the feelings of guilt you have.

People who travel to countries with Chagas disease

What do you need to know?

There are no drugs (vaccinations or medicine) to prevent Chagas disease. People without the disease are at risk of becoming infected and people who are already affected are at risk of being re-infected.

The preventive measure we have is education.

What do you need to do?

• Try not to sleep in risky places (rural areas, adobe houses, etc.)
• Use mosquito nets, protective clothing and insect repellents.

The community

What do you need to know?

Chagas disease has psychological, social and cultural characteristics and determinants for the people affected, their families and society. In fact, a diagnosis of Chagas disease can have significant repercussions from a psychological and social point of view.

Often, the people affected do not want to know if they are affected or not for fear of the disease and its imagined consequences: often these are based on popular beliefs and/or previous experience with relatives, friends or acquaintances who have died in an unfavourable social environment. Sometimes, they hide the disease for fear of being excluded at work.

What do you need to do?

• Defend the health rights of others.
• Avoid the disease leading to exclusion and marginalisation.
• Try to actively demystify the fatalist view of the disease.
• Promote access to care and social integration for the people affected.
• Promote associations of affected people through social media.
• Create and promote strategies to raise the profile of the disease.
• Foster social support spaces and networks, associations etc. for people affected.