What do you need to bear in mind if you have diphtheria or you are caring for someone who does?

Diphtheria is transmitted via the respiratory tract, mainly, and also by direct contact with a sick person or a healthy carrier of the bacteria. The illness may affect the tonsils, pharynx, the larynx, the nasal mucous membrane and, much less frequently, the skin or other mucous membranes. The bacteria forms a thick grey membrane with a dark red swollen area around it, which in the case of the nose and throat may obstruct the respiratory tract.

Some people may carry the bacteria in their nose or throat. If these people are vaccinated they will not develop the illness, but they may transmit the bacterium to other people via droplets produced when they sneeze or cough. The existence of carriers in countries with no cases of the illness is very rare.

A stroke is a clinical syndrome characterised by rapid development of signs of neurological involvement lasting more than 24 hours. Vascular in origin, a stroke is considered a medical emergency that requires immediate diagnosis and treatment.

The person who has suffered a stroke usually needs further rehabilitation but, in general, it is important to respect their initiative and autonomy, even if it takes them longer, and to avoid overprotection.

Recommendations and treatment for relatives and carers

Communication

• Speak naturally, using simple words and short sentences, without shouting.
• In the first phase after a stroke, ask short, yes/no questions.
• Promote conversations about every-day life and familiar situations to stimulate the patient’s language.
• If necessary, accompany conversations with gestures to facilitate understanding.
• Items such as the radio or television should be turned off to avoid distractions.
• Respect the response time: avoid showing impatience or cutting off the patient.
• In serious cases, you can use alternative means of communication, such as boards with everyday images on them. There are also mobile apps that can help.

Movement

• Do the exercises recommended by the physiotherapist.
• Move joints and avoid incorrect positions.
• When moving a patient, never touch the affected side.
• It is important that the patient be out of bed for as long as possible.
• Pillows should be used to protect zones of friction and position should be changed every four hours.
• Before the patient drives again, a specialist should be consulted.

Sleep and rest

• It is recommended to sleep seven or eight hours a day.
• Provide a quiet environment and provide a point of light, so the patient can orient themselves during the night.
• Create a day atmosphere (more active, bright) and a different, night atmosphere (quieter, darker). This helps in understanding the sleep pattern.
• Avoid letting them sleep during the day, except for a short afternoon nap.
• After a stroke, the patient may find themself more tired for a while. It is important to become more active but without forcing it.

Hygiene

• Encourage the patient to collaborate in their personal hygiene.
• Whenever possible, use a shower, instead of the bathtub, with a chair inside and a handle on the wall.
• The soap should be neutral and free of alcohol, as this can dry the skin.
• The skin should be dried properly, taking special care with folds. It should then be hydrated and protected.
• Maintain proper oral hygiene.
• Watch bony prominences to prevent pressure sores.

Getting dressed

• Wear comfortable clothes that are easy to put on and take off, such as sportswear with elastic and no buttons.
• Start dressing the patient on the affected side and undressing them on the side that is not affected. It is preferable to be seated.
• To put on trousers (pants), especially if the patient is in bed, it is easier to gather up the trousers, insert one leg at a time and then pull them up.
• Shoes should be closed, with no laces and non-slip soles, which fit the foot well. Shoehorns can make it easier to put on shoes.
• The patient feels the same degree of cold and heat as the carer, so do not give them too many layers.

Physical obstacles

• Remove obstacles such as carpets or chairs to avoid tripping.
• Adapt the home to the new situation: install bars, a taller toilet or shower, etc.
• Adapt the home to improve patient autonomy and prevent falls. For example: have a high bed (70 cm) to make it easier for the patient to get up and down comfortably.

Leisure and recreational activities

• Maintaining social life and hobbies, while respecting the limitations of the patient, improves self-esteem and avoids isolation.
• Incorporate leisure activities gradually, according to the degree of autonomy and in consensus with the patient.

Sex

• Immediately after a stroke, sexual desire may decrease, but it will gradually recover. If in doubt, consult a doctor.
• Paralysis may make sex trickier, but not impossible.
• Fear of suffering another stroke during sex is generally unfounded.
• It is important to talk to your partner about any fears or worries that may arise.

Return to work

• The return to work must be planned, together with the company, so it is gradual, both in terms of demands and time.
• After re-joining the workplace, the situation should be re-evaluated in case changes or adaptations need to be made to improve patient performance and ability.

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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 accept 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.

The treatment for Coeliac disease is to follow a strict gluten-free diet for life. A gluten-free diet should be based on a varied and balanced diet combining foods that do not contain gluten, including gluten-free cereals. Cross contamination at home should also be taken into account (making sure foods suitable for Coeliacs have not come into contact with other foods, utensils or surfaces that contain gluten) and precautions taken when eating out. It is also important to always check the ingredients list on food labels.

This sheet contains basic tips on having a gluten-free diet in a safe and balanced way.

What do you need to bear in mind if you have Coeliac disease or you are caring for someone who does?

Gluten is a protein complex found in cereals. It is made up of two proteins, gliadin and glutenin. It is important that Coeliac patients permanently remove foods containing gliadin and glutenin from their diet. This means eliminating wheat, barley, rye, oats, triticale (a hybrid of wheat and rye) and all derivatives.

Although foods must be removed from their diet, patients with Coeliac disease must follow a balanced diet, ensuring they get sufficient nutrients. To achieve this you need to incorporate a wide variety of foods with different preparation and cooking methods.

Patients with Coeliac disease should base their diet on dairy, meat, fish, eggs, fruit, vegetables and pulses, and cereals they can eat, such as corn, rice, quinoa, millet, amaranth, sorghum, teff or buckwheat. Sugar and processed foods should be ingested to a lesser extent.

• Cereals WITH GLUTEN: wheat, barley, oats and triticale
• Cereals WITHOUT GLUTEN: rice, quinoa, millet, corn, amaranth, sorghum, buckwheat and teff

Foods should be prepared as normal, avoiding cross contamination: boiled, steamed, grilled, fried or baked. Batter and breadcrumbs should be made with flour or bread that is suitable for Coeliacs.

It is important to take care with processed or packaged foods. It is harder to avoid cross contamination in processed foods.

Read product labels carefully when you are buying food that is not fresh. Some foods naturally do not contain gluten, but in their commercially available form they do, as gluten is sometimes added during the manufacturing process. To be on the safe side, it is therefore better to avoid unlabelled products, such as those bought in bulk or handmade products.

It is a good idea to have a space set aside just for storing gluten-free foods. You should also use clean cooking utensils to make sure they have not come into contact with products containing gluten.

When eating out, take precautions. It is important to make sure that what you eat has not come into contact with any food containing gluten. One example would be oils in which foods containing gluten have been fried.

What do you need to bear in mind if you are caring for someone with Asperger’s?

People with Asperger’s syndrome may have different requirements depending on their age, surroundings and the awareness that they have of their difficulties. For this reason, they need a tailor-made programme that responds to their specific case.

The aim of these customised programmes is to:

• Promote better adaptation in patients
• Develop social skills, taking into account the person’s interests and motivations
• Improve family communication
• Establish routines
• Promote cognitive development
• Tackle sensory dysfunction

Treatment

It is important to manage their development through different disciplines. These may include cognitive treatments, social skills programmes and occupational therapy for the patient. You also have to consider guidelines on how to resolve conflicts and how to manage pyschoeducational groups for families or caregivers.

In infants, from an emotional and attitudinal point of view, it is important to learn to identify the warning signs in their mood. In this way, we can prevent difficulties in anger management and low tolerance to frustration, since they are patients with a high degree of sensitivity to criticism. Avoid punishment as much as possible and establish more positive reinforcement strategies.

All these guidelines must be established in a space where the differences the child or adolescent presents are valued positively, including their limitations, but also their possibilities and positive aspects.

In adults, many of these characteristics continue, as Asperger’s cannot be cured. In any case, personalised treatment, involving family members and good communication with professionals can allow a better quality of life.