We are the combination of four hospitals: the General Hospital, the Children’s Hospital, the Women’s Hospital and the Traumatology, Rehabilitation and Burns Hospital. We are part of the Vall d’Hebron Barcelona Hospital Campus: a world-leading health park where healthcare plays a crucial role.
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Ampullary epidermolysis is a group of genetic disorders that may present themselves in various ways, from milder forms to more severe ones: affecting the skin and mucous membranes, involving the formation of blisters and vesicles after the slightest trauma. They can also affect other organs, in different ways.
The best thing is if the patients, their families and their caregivers receive comprehensive health education, especially when they are first diagnosed, during the baby’s first few days, when skin lesions can already begin to occur.
The education aimed at preventing the evolution and complications of the disease will be given by professionals from the following disciplines:
Skin affected by ampullary epidermolysis is very sensitive to the slightest pressure or friction, which then causes a blister to form. To avoid damage, bear in mind the following recommendations:
Amyotrophic lateral sclerosis (ALS) causes muscular degeneration that can affect motor autonomy, oral communication, swallowing and breathing, but the senses, intellect and eyes muscles remain intact. It can therefore affect the respiratory muscles, which is why respiratory care is essential for patients’ quality of life.
In order to improve the respiratory difficulties in patients, ventilation therapy can be used through non-invasive ventilation.
Ventilation therapy refers to breathing support using a ventilator, usually at night during sleep, to achieve:
Ventilation is carried out non-invasively, by means of a patient-adjusted mask (nasal or full face) connected by a tube to the ventilator or respirator.
When patients need this therapy, the place and time it is started, whether outpatient or hospital admission, is planned in a personalised way with the consent of the patient and the person caring for them.
Education for the patient and their main carer should begin as soon as possible, both from the point of view of managing secretions and the resulting care, as well as the emotional support they need to receive. This means that during the patient’s admission or outpatient visit, the patient and their carer will be trained in:
The patient and the carer must take care to keep the airway in good condition to allow secretions to be managed. It is important to preserve the ability to cough where possible, but if coughing is no longer effective, the patient and carer will need to start learning how to use mechanical aids (cough assist or mechanically assisted cough). In certain cases secretion suction may also be used.
To improve the quality of life of patients it is important to follow the advice below:
The most effective way of avoiding the illness is vaccination. The diphtheria vaccination is highly effective and is administered as part of the Systematic Immunisation Programme in Catalonia (Programa de vacunacions sistemàtiques).
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.
Guidelines for caring for stroke patients, covering communication, mobility, hygiene, sleep, clothing, home adaptation, recreational activities, sexuality, and gradual return to work to promote autonomy and overall recovery.
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
People with chronic Chagas disease should maintain regular medical follow-ups, recognize warning signs, maintain a healthy lifestyle, follow medical advice, and participate in peer education. These measures help prevent complications, manage psychological stress, and improve quality of life.
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:
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.
It is calculated that currently less than 10% of infected people know that they have the disease.
Who can be infected?
How do you know if you are infected?
What do you need to do?
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?
What are the warning signs?
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?
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.
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.
People with celiac disease must follow a strict gluten-free diet, avoiding cross-contamination and checking food ingredients, to maintain balanced nutrition and prevent complications from accidental gluten intake.
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.
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.
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.
Patients with Asperger’s syndrome need a stable and predictable environment that can be easily adapted. It is key to their well-being to establish routines according to their interests, organise their time, avoid inactivity or over intense activity as well as sudden changes. Although the syndrome has no cure, appropriate treatment and involving family members can improve the quality of life of patients.
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:
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.
Hereditary angioedema is a rare genetic disease that affects approximately one in 50,000 people. It is usually an inherited disorder and is characterised by the accumulation of fluids outside the blood vessels, causing swelling of the face, hands, feet, extremities, genitals, gastrointestinal tract or the upper respiratory tract.
Because it is a low-prevalence disease with symptoms similar to those of other diseases and is therefore difficult to diagnose, it is important for there to be reference centres so that suspected and diagnosed cases can be centralised.
The inflammation that hereditary angioedema causes does not present associated itching and may last for 1 to 5 days. These symptoms are developed as a result of the malfunction of certain proteins that help maintain the normal flow of fluids through the blood vessels (arteries, veins and capillaries).
The seriousness of the disease shows a significant degree of variance. Angioedema episodes may be extremely incapacitating and have a serious effect on the patent’s quality of life. When it occurs in the region of the mouth or neck, the sufferer may die of asphyxia if they are not given preventive treatment.
In most cases symptoms start to manifest in childhood and/or puberty and continue throughout adult life.
There are different types of hereditary angioedema and they are classified according to whether or not they present a deficiency of the C1 component of the complement (C1-INH).
Swelling of the subcutaneous tissue in any part of the body, although it is most commonly found in:
Depending on the affected area, the symptoms may range from local discomfort to invalidity of the affected extremity, discomfort or pain when swallowing, voice changes, loss of voice, or dyspnoea (shortness of breath).
At one time of their life up to 50% of patients may present an episode that affects the throat, which if not immediately treated could lead to asphyxia.
Hereditary angioedema affects people who exhibit a mutation in certain genes, such as SERPING1, F12, PLG, KNG1 and ANGPT1. As it is a dominant autosomal disease, an affected patient has a 50% chance of passing it on to their children. Given that it is a genetic disorder, it is common to find that more than one member of the family is affected.
Depending on the type of mutation, it may affect men and women equally (types I and II) or women more frequently (HAE-nC1-INH). Cases of hereditary angioedema without C1-INH deficiency are usually associated with hyperoestrogenic states, such as pregnancy or the consumption of contraceptives that contain oestrogens.
The Allergology Clinic first assesses patients who present with recurring angioedema episodes and cases in which there are family members who also suffer them. Subsequently, a blood analysis is requested to determine the levels of the components of the complement, including the inhibitor of component C1 (C1-INH) and, finally, the diagnosis is completed with a genetic study.
Treatment depends on the number of attacks, the severity of the symptoms and the degree to which quality of life is affected. Treatment is always on a case-by-case basis and may be acute, which means the subcutaneous of intravenous administration of medication at the time of the angioedema attack, or preventive, to stop attacks occurring so frequently. The latter treatment is usually recommended for the patients who suffer the most episodes.
Angioedema treatments can be self-administered by the patients.
In the case of surgery, endoscopies, tooth extractions or certain dental procedures, treatment must be given in advance to prevent an attack.
Blood analysis normally forms part of the diagnostic procedure. Depending on the treatment, during monitoring it may be necessary to perform an abdominal ultrasound and draw blood for analysis.
Factors known to possibly trigger attacks should be avoided as far as possible:
Sarcomas are an uncommon type of cancer that account for only 1-2% of all tumours in adults. They also represent a complex entity, given that there are more than 70 types, with differences in terms of their diagnosis, prognosis and treatment. Accordingly, sarcoma patients need to be assessed by multidisciplinary committees with vast experience in this disease.
Sarcomas are a set of rare tumours whose origin lies in the soft tissues of the body or the bones.
Soft tissues include muscles, nerves, vessels and fat. These tissues may also form part of organs.
The infrequency of sarcomas makes it necessary to handle clinical cases and their treatment on an individual basis, which generally involves a decision-making process that is shared by several professionals with expertise in this disease and the patients themselves.
The correct diagnosis of a sarcoma and its specific type is the first critical step to be taken, as it will form the basis of the clinical handling of the patient, as well as the precise information about the nature of their disease.
In contrast to many cancers, sarcomas do not usually generate symptoms in their early stages of growth. This is because they develop in areas of the body in which they can progressively grow by pushing against structures and organs.
The first symptom may be a painless lump. The majority of lumps are benign, but if it grows quickly, hurts, is deep and/or measures more than 5 centimetres, it is more likely to be a sarcoma. Sometimes the symptoms may appear as a result of excessive compression of the body’s various tissues and organs.
There is no clear factor that triggers a sarcoma. Certain inherited genetic syndromes may predispose a person to being more likely to develop a type of sarcoma, such as Li–Fraumeni syndrome, neurofibromatosis or familial adenomatous polyposis.
One of the most important steps is to confirm the clinical suspicion of sarcoma and identify its specific type. This requires a biopsy to obtain a fragment of the tumour so it can be studied by Pathological Anatomy.
It is sometimes diagnosed with molecular techniques in association with radiological tests like x-rays, computed tomography (CT), magnetic resonance imaging (MRI) or PET-CT.
The treatment of all sarcoma patients is always agreed by multidisciplinary committees composed of professionals with expertise in sarcomas from a variety of the services of our centre: Medical Oncology, Radiation Oncology, Traumatology, General Surgery, Radiology and Pathological Anatomy.
Given that sarcomas may arise in any part of the body, occasionally other specialists may also participate.
The treatment of sarcoma patients may include:
The most suitable procedure depends on a number of different factors in addition to the specific type of sarcoma. Targeted therapy and immunotherapy play a very important role in certain types of sarcoma. Finally, there are also clinical trials that experiment with new therapies.
The commonest are radiological tests like those described above (x-ray, CT, MRI and PET-CT).
As there is no specific cause of sarcomas, in the majority of cases there are no specific measures that can be taken beyond the usual healthy living habits recommended by the World Health Organization.
Patients with inherited genetic syndromes, however, are advised to undergo monitoring in specialist units.
The coronavirus SARS-CoV-2 is a virus known as acute respiratory syndrome coronavirus 2 that was first observed in Wuhan (Hubei, China) in December 2019. This new virus is the cause of an infectious disease, known as COVID- 19, which causes respiratory infections to people. In most cases, eight out of ten, the symptoms are mild.
It is important to contact 061 in case of fever, cough, shortness of breath and if you have traveled or have been in contact with a person from the highest risk areas. The World Health Organization (WHO) has declared the SARS-CoV-2 coronavirus as an international public health crisis.
Coronavirus is a family of viruses that circulates among animals. Some types of coronaviruses can also affect people, causing respiratory infections, such as the coronavirus SARS-CoV-2.
In 80% of cases, the symptoms are mild and can be confused with those of a flu:
These symptoms may appear gradually accompanied by nasal congestion or sore throat. Moderate cases may be accompanied by a feeling of shortness of breath and, in the most severe, the infection causes more severe complications, such as pneumonia.
According to current data, there are people who have become infected but have not developed any symptoms or are ill. Although in most cases the symptoms are mild, some people, with a more severe prognosis, have died.
The SARS-CoV-2 coronavirus can infect anyone, regardless of their age. Even so, two groups with greater risk have been detected:
The risk of infection is higher in those areas where there are cases of SARS-CoV-2 coronavirus diagnosed. Therefore, everyone needs to take protective measures, such as maintaining good hand hygiene or covering their mouths with their elbows or with a tissue when coughing.
Studies conducted so far suggest that the SARS-CoV-2 coronavirus is transmitted by air, from person to person, through droplets from the nose or mouth that are spread when an infected person coughs or exhales. Contagion occurs when these droplets are exhaled by a healthy person or when they fall on an object or surface that the person subsequently touches and then, without disinfecting the hands, touches the eyes, nose or mouth.
Between infection with the virus and the appearance of the first symptoms of the ailment, it is estimated that there may be an incubation period of between one and fourteen days. On average it is estimated that this is five days.
The diagnosis is made through a specific COVID-19 detection test.
Currently, there is no specific treatment for SARS-CoV-2 coronavirus, only supportive treatment. In milder cases, the treatment is similar to the flu: pain relievers to control fever and stay properly hydrated.
In the most severe cases, if the patient requires ventilatory support, due to pneumonia or respiratory failure, the patient is admitted to the ICU.
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