On the occasion of the celebration of liver cancer day and to give it greater visibility, as well as raise awareness among the population about the knowledge of this disease in relation to others, we bring you this news.

Relationship between the liver and AATD

AATD is the most common hereditary disease in Spain and in its most severe forms, it can cause damage to the lungs and liver.

Not all people with AAT deficiency suffer from liver problems, since in many cases it is mild and the patient does not even know they have it.

Alpha-1 Antitrypsin is a protein produced in the liver and its main function is to protect the lung from degradation and inflammation caused by infections or external agents.

When DAAT exists, this protein remains stagnant in the liver, which produces two consequences: it damages this organ and, by not passing into the bloodstream, it does not reach the lungs and leaves them unprotected.

The most common disease is cirrhosis, where severe scarring occurs in the liver; this can appear even in children and newborns due to ATT deficiency.

Diseases related to DAAT and life cycle

The development of hepatocellular carcinoma has been described in 2-3% of elderly ZZ individuals, or Wegener’s disease in 2-3%, and neutrophilic panniculitis.

This corresponds to 1 in 100 Pi*ZZ in the UK registry and 1 in 1,000 in the American registry.

Probability of incidence

Severe alpha 1-antitrypsin (AAT) deficiency is a complex monogenic disorder, with great variability in its clinical presentation, percentage of affected individuals and age of onset of diseases such as COPD.

Consequences of alpha 1 antitrypsin deficiency in the liver

Hepatic disease in ZZ homozygous individuals is of variable severity and is due to the formation of protein polymers, which cannot be excreted by the hepatocyte and accumulate inside it (90% in the Z mutation).

Up to 70% of ZZ newborns may present abnormal liver function tests, but only 10% develop prolonged neonatal colostasis and 2.5% of them develop childhood liver cirrhosis.

Consequences of alpha 1 antitrypsin deficiency in the liver

In adults, the risk of liver cirrhosis depends on sex and age, being more pronounced in ZZ men over 50 years of age (20-40%) who, in addition, have a higher risk of hepatocellular carcinoma, both in cirrhotic and non-cirrhotic livers. cirrhotics, and is independent of their history of hepatitis B (HBV) or C (HCV) virus infection.

Liver cirrhosis

Liver diseases linked to Alpha-11 Antitrypsin Deficiency are:

1. Chronic hepatitis
2. Cirrhosis
3. Liver carcinoma.

It is not yet known why some individuals with Alpha-1 Antitrypsin Deficiency develop liver damage and others do not.

Liver lesions are related to the retention and polymerization of AAT in the liver in those affected with the PiZ allele; Furthermore, it usually occurs in childhood.

It is diagnosed when there is liver dysfunction that cannot be attributed to any other cause.

INCIDENCE IN CHILDREN AND ADOLESCENTS

Frequency

The good news is that in most cases these alterations are stable during childhood and adolescence, without becoming serious. 

Only in certain cases can progressive liver damage occur that requires transplantation in children.

It is estimated that between 10-15% of children with the two defective ZZ genes develop clinical liver disease before the age of 20 years. 

Liver disease can also occur in adults and become severe in middle age.

Symptoms of Alpha 1 Antitrypsin Deficiency

Adult subjects with severe AATD usually present respiratory symptoms, but with early onset, starting at age 35 in smokers and after age 45 in non-smokers.

1. The most common symptom is dyspnea on exertion, which appears in 70-90% of patients.
2. Other common symptoms are cough (42%) and chronic expectoration (46%), related to the presence of bronchiectasis (23% of ZZ individuals).
3. Wheezing can be persistent or appear during exacerbations in up to 70-80% of cases.
4. Regarding the physical examination, there is no data that is specific to DAAT.

Recomendaciones

To finish, we only advise you on some simple guidelines such as quitting smoking, exercising daily, following a balanced diet, avoiding processed foods; and finally carry out periodic monitoring by medical experts.

Sources: Centro Andaluz Alfa 1, Alfa 1 España

La entrada Liver and AATD se publicó primero en Centro Andaluz Alfa-1.

¿What is?

It is a serious, rare disease.

It affects a small number of people: less than 5 out of 10,000 and about 80% are of genetic origin.

Diagnosis of rare diseases

Minority diseases are those with a low prevalence (< 5/10,000 inhabitants).

This may affect a late diagnosis due to the difficulty in conducting research.

This complexity is justified by the very low number of diagnoses, as well as the scarce financing of research projects.

It is worth mentioning the inaccessibility to specific treatments.

Also, most are genetic and hereditary, and the lack of treatment can affect the quality of life of patients and families.

Rare diseases: Accreditation of Excellence

The Spanish Society of Internal Medicine has awarded the Minority Diseases Unit of the San Cecilio Clinic in Granada

A team made up of 29 people from 18 specialties is recognized for its great professional work in patient care, training and research.

This team of professionals received the highest level of recognition, meeting all the requirements of excellence rigorously, according to the levels of demand of the SEMI certification.

Synergies between professionals

Phd. Pilar Giner, head of the Internal Medicine service, mentions that these results have been achieved thanks to the collaboration and effort of this multidisciplinary team.

For his part, Manuel Reyes, director of the San Cecilio Clinic, congratulated the entire team and shows the pride he feels for having achieved the accreditation that certifies good patient care.

The San Cecilio Clinic already has four additional certifications in the following specialties: Vascular Risk Unit (Care level)

Systemic Autoimmune Diseases Unit (Advanced level)
Clinical Ultrasound (Teaching level)

More than 600 consultations and more than 100 patients attended

The Minority Diseases Unit was created in 2018 to respond to patients affected by these pathologies considered rare
Since then, the volume of services has grown progressively.

It cares for patients with diagnosed minority diseases or with a high index of suspicion due to genetic or metabolic causes and each case is analyzed comprehensively.

The objective of the unit is, according to Pilar Giner, head of the Internal Medicine service at the San Cecilio Clinic, “to offer specific dedication, care adjusted to the complexity of these diseases and a multidisciplinary approach to the patient”

To do this, the specialists who make up the unit address the specific problems of each patient in order to subsequently make decisions by consensus.

These patients mostly belong to the referral area of the hospital, although the number of referrals to the unit from other health areas is growing.

Its operation of the unit is possible thanks to the coordination of the Internal Medicine service and the involvement of the 29 professionals

These belong to 18 medical specialties and other professional categories such as nursing, psychology, or pharmacy.

This joint work allows us to attend to a very varied profile of patients, since the minority diseases taken as a whole are numerous, with more than 7,000 different ones described.

Source: Hospital Clínico San Cecilio

La entrada Minority Diseases se publicó primero en Centro Andaluz Alfa-1.

Reunion of patients with Alpha 1 Deficiency

The Alpha 1 Association of Spain organizes an event that marks the hearts of patients with Alpha 1 Deficiency.
This year there have been 60 participants, including patients and relatives, who have been encouraged to travel 130 kilometers in 6 days.

The starting point was León and they ended in Villafranca del Bierzo, with stops at the Church of Santiago and the Puerta del Perdón, and at the Monastery of Santa María de Carracedo.

Despite the high temperatures and the additional medical equipment, such as the oxygen concentrator, the participants managed to finish the course.

Without a doubt, it has been a wonderful experience in which laughter, anecdotes, good times and new friendships have been shared, in short, a memory for a lifetime.

The pilgrimage of Alpha 1 patients give voice to their condition

To start, the main objective is to give a voice to patients with this rare disease, of genetic origin and which causes serious liver and lung pathologies.

In addition, the activity has had the support of Grifols, Linde, CSL Behring, Chiesi and GSK.

In 2018 it was the last meeting, and it is that with the pandemic it has not been able to organize itself again, in this way the reunion was highly anticipated and desired.

Besides, Mariano Pastor, head of the Alfa 1 Association, was excited, and we felt it on his words,

His words showed a lot of love and affection to the members of the association, saying that the Alfas en Camino Edition makes it possible to create firm ties between those who suffer the consequences of the Deficit.

Alpha 1 Patient Association

The Alpha 1 Patient Association is already a big family

There is a great union and they support each other

In numbers, in Spain there may be approximately 14,000 people, of which an estimated 6% have been diagnosed.

For this reason the Alphas have taken advantage of the pilgrimage to inform the people who were on their way.

Spreading knowledge is in the alpha’s genes

In this case, they tried to explain the importance of accelerating the diagnosis of this disease to avoid greater ills, including serious and irreversible conditions in the lungs and liver.

Spread information

Equals prevent disease

Alpha 1 deficiency is a rare genetic condition that originates in the liver and affects the respiratory system.

Therefore, the consequences in children can lead to liver diseases, however, in adults it is more common for respiratory diseases to originate.

In the northern areas of Spain there are more diagnoses, perhaps this is preceded by the Viking settlements of the Middle Ages, where it is believed that this disease really originated.

This can be explained from the so-called Z allele, which produces its most severe variant, and whose DNA is typical of Scandinavian populations.

There are risks associated with Alpha 1 Deficiency

Mainly external factors such as tobacco use, air pollution, exposure to respiratory toxins and particles in the work environment, as well as inadequate nutrition, affect more.

For this reason, early diagnosis is key to preventing more serious effects, with the aim of monitoring those affected and establishing periodic controls that allow for timely detection of related diseases.

The diagnosis of Alpha-1 Antitrypsin Deficiency is made by a blood test

If Alpha protein levels are lower than normal, a genetic study is continued to determine possible combinations of mutated genes that cause deficiency.

Since Alpha-1 is inherited from parent to child, once it is detected in one family member, genetic testing on the rest of the family is recommended.

Alpha 1 Spain Association

Afterwards, the Patient AssociationAlfa 1 Spain is in permanent contact with doctors from all over Spain to better monitor those affected and establish periodic controls that allow associated diseases to be detected in time.

Alfa-1 Spain is a non-member organization:

FEDER (Federation of Associations for Rare Diseases), FENAER (federation of respiratory disease associations) and FNETH (federation of associations of affected and liver transplant recipients).

Overall, Its mission is to collaborate in research and raise awareness among the population about this incurable genetic condition.

And its ultimate goal is to defend the rights of those affected and access to quality health care, promote awareness of AATD and its early diagnosis.

Fuentes:

Leonoticias, Ileonnoticias, Elbierzodiginal, Alfa 1 España

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Attention Plan

People affected by rare diseases join together a broad set of heterogeneous diseases.

The common characteristic is that there is incomplete knowledge and multidisciplinary interventions are required.

In general, they affect an unknown number of people, although it tends to be small.

It is estimated that there is 1 case per 2,000 people in diseases that can be fatal or cause chronic debilitation of the patient.

Therefore, they pose a challenge in terms of public health due to the lack of information on their magnitude, evolution and trends; In addition, many of them present a chronic and disabling course, generating a negative impact on the affected people and their families.

For all these reasons, there are numerous initiatives in the health, social and educational fields, in essence, they seek to improve this situation of uncertainty through coordinated actions.

In recent years, social and institutional concern towards minority diseases has increased.

In response, numerous national and international associations, institutes and consortia have been created.

Numerous publications have also been written, although various projects and regulations have also been carried out.

BASES OF KNOWLEDGE

Rare diseases can manifest at any age and present a wide diversity of alterations and symptoms that vary not only from one disease to another, but also from one patient to another depending on the degree of involvement and its evolution.

The pathogenesis is considered to be an imbalance between the destructive proteolytic load resulting from inhaled proinflammatory factors and the alteration of defenses that occurs in AATD.

• Chronicity
• Little etiological knowledge
• Lack of curative treatment or low accessibility
• Significant burden of disease or limitation of quality of life.

European Union proposals driven to people affected by rare diseases

Decision 1295 (1999) of the European Parliament and the Council, in coordination with other community measures, is intended to guarantee a high level of health protection against rare diseases.

The proposed initiatives are the following:

• Improve knowledge about them.
• Promote and facilitate access to the information network on rare diseases, especially for health professionals, researchers and people directly or indirectly affected by these diseases.
• Strengthen transnational collaboration between volunteers and professional organizations that provide assistance to these people.
• Guarantee adequate management of the temporal-spatial groups of patients or clusters of those affected.

To ensure equity for access to diagnosis, treatment and care” through the following actions:

• Creation of reference centers
• Improving access to orphan drugs and promoting research into rare diseases.
• The recognition of rare diseases as chronic and their priority nature.
• The need to initiate epidemiological studies.
• The development of information for patients and health professionals, as well as the training of these professionals.
• Creation of the National Health System Strategy on rare diseases.

Criterios Generales

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Spain promotes the dissemination of knowledge on Rare Diseases

In Spain, the main mission of the Institute for Research on Rare Diseases (IIER) of the Carlos III Health Institute (ISCIII) is to coordinate the actions of the twelve research networks for Rare Diseases.

One of them, the REpIER network, has as its main objective to develop an epidemiological research program for rare diseases in Spain, which provides greater knowledge of their situation, in clinical, epidemiological and therapeutic terms, at the same time that provides a more appropriate orientation for the development of socio-sanitary action guidelines.

Andalusia supports research

In the European Union, a rare disease would be one that does not affect more than 227,000 people.

If it is estimated that there are between 7,000-8,000 diseases that affect 6-7% of the general population:

• In the European Union, between 27-30 million people could be affected.
• In Spain between 2.5-3 million people
• In Andalusia, approximately 500,000 people.

The Andalusian Care Plan for People Affected by Rare Diseases began in 2008 to address this complex public health problem.

The general objective of the Andalusian Plan is to ensure adequate planning and management of health resources for the care of people with rare diseases and their families, so that their high quality and accessibility can be guaranteed under conditions of equity.

Its aim is:

• To increase epidemiological knowledge about rare diseases
• To improve the access of affected people to safe and quality care and attention.
• To improve the management of knowledge in rare diseases, the training of professionals and encourage research.
• To develop updated information on rare diseases of interest to affected people, health professionals and society in general.
• Recognize the specificity of rare diseases and address them as a whole from the health system with a global strategy, with the participation of associations of affected people.

Common factors in People affected by Rare Diseases

Some of the characteristics that make rare diseases considered as a whole constitute a Public Health problem are:

• Tendency to chronicity and disability, most of the time with a high family, social and health cost
• They carry a significant burden of disease or limit the quality of life of the people affected and those around them
• Entities of high etiological, diagnostic and evolutionary complexity
• Lack of curative treatments or low accessibility to them
• Promote situations of inequity in the accessibility to complete health care, by requiring means of prevention, diagnosis and expensive or complex treatment (genetic analysis, orphan drugs…)
• They lack a specific approach, since unlike prevalent chronic diseases, rare diseases are not the reason for scheduled health actions, for the purposes of management, provision and coordination of services
• Difficulty knowing the distribution of patients and operational health resources (reference centers, professional teams and researchers)
• Little or insufficient useful information for the people affected and for the professionals responsible for their care
• Lack of adequate development of specific competencies among health professionals
• Its low frequency, the geographical dispersion of patients and the lack of records, among other aspects, make it difficult to research new treatments, the demonstration of hypotheses about the etiology of these diseases.

Minority respiratory diseases

Minority respiratory diseases account for approximately 3% of all rare diseases

This approximation is based on the Orphanet catalog of rare diseases (www.orpha.net), which has 5954 diseases, of which 181 correspond to lung diseases.

In the first ERM Forum, held in February 2010, at the SEPAR headquarters in Barcelona, the first ERM FORUM was held. The highlights that were gleaned from these forums were:

• The delay in the diagnosis and the uncertainty about it due to the difficulties of professionals to accumulate experience on rare diseases or access specialists.
• The complexity of diagnostic tests and treatments, both during the course of the disease and after the transplant, make patients highly dependent on referral hospitals and specialists.
• Patients with rare respiratory diseases feel that they are an underrepresented minority both among respiratory patients in general, and among the group of rare diseases of other origin.
• Lack of knowledge about these diseases also poses problems of a social or legal nature, such as variability in access to disability or dependency benefits or discrepancies in the availability of oxygen therapy devices.
• Research in this field encounters more obstacles than in more prevalent pathologies.
• This concern materialized in the proposal to dedicate the year 2012 to MREs.

The SEPAR ERM Year was intended to:

• Provide professionals with training and documentation that allows them to improve their knowledge of minority diseases
• Have fully updated reference materials.
• Work as a team with patient associations to enhance their work to support those affected.
• Improve the knowledge of society and institutions about respiratory diseases.
• Encourage research.

Objectives:

• Share experience among professionals and improve knowledge of the disease (registries, research…).
• Be accessible to patients, clinicians, scientists, who need advice on ERM (materials, training, networking).
• Establish alliances with patient associations to jointly transform the natural history of the disease (expert patient).

What is?

It is a rare disease characterized by abnormally low concentrations of Alpha-1 Antitrypsin (AAT) in plasma.

• This is one of the best known and most frequent genetic causes.
• On the other hand, it could lead to chronic obstructive pulmonary disease (COPD), emphysema, or liver disease.

Challenges

In search of the cure

Despite the well-known relationship of COPD secondary to AATD, it continues to be a challenge because it is a disease with a high underdiagnosis.

Another goal is to disseminate knowledge of this disease from a basic point of view (etiopathogenesis and epidemiology), as well as its treatment.
Its status as a minority respiratory disease makes it necessary to concentrate the cases detected in AATD Centers of Excellence, with the aim of generating knowledge about the disease and developing lines of research.

Sources: Consejería de Andalucía, Junta de Andalucía, Centro Andaluz Alfa 1

La entrada People affected by Rare Diseases se publicó primero en Centro Andaluz Alfa-1.

We are what we eat

Balanced nutrition is essential for a healthy life.

In the case of respiratory patients, adequate nutrition becomes vital.

The main problem that occurs in patients with emphysema is weight loss.

Nutritional status can be quantified by the Body Mass Index (BMI), which is the ratio of weight (kg) divided by height squared (meters).

Causes of malnutrition

A BMI less than 21 Kg/m 2 indicates malnutrition
The causes of malnutrition are varied.

There is a greater feeling of fullness after ingestion with shortness of breath and decreased appetite.
As a consequence, muscle weakness, a deterioration in the quality of life and a predisposition to infections.

What is a balanced diet?

The importance of nutrition for health

The ideal daily diet should provide 35 kilocalories per kg of weight, with a balanced proportion of 20% protein (1 g per kg of weight), 30% lipids and the remaining 50% carbohydrates.

What must be considered?

In general, it is recommended not to abuse fats as they are difficult to digest, while carbohydrates provide energy that is quickly absorbed. On the other hand, an excess of protein increases energy expenditure.
In general, it is recommended to eat small meals several times a day. Food should be nutritious and easy to eat.

What drinks are recommended to obtain a balanced diet?

The best drink is water, at least a liter and a half a day.

Fizzy drinks and alcohol should be avoided.

The usual daily diet should consist of dairy products, cereals, legumes, vegetables, vegetables and fruits.

You can add meat or fish and so-called diet enrichers such as sauces, nuts, cookies, cocoa, honey or eggs.

Appetite stimulants or food supplements are sometimes prescribed individually by specialists.

Finally, physical exercise, such as walking half an hour a day, will be an excellent complement.

The importance of nutrition for health

NUTRITIONAL TIPS

What to eat when you feel well?

• Balanced diet (3-4 shots/day).
• Eat foods with little salt.
• Avoid heavy digestions.
• Check your weight periodically.
• Try to avoid heavy digestions.
• Try to avoid heavy digestions.
• Take fiber to combat constipation

What can you eat when you feel bad?

• Light and not very abundant meals (5-6 servings of soft consistency). Eat foods with little salt.
• Try to avoid heavy digestions.
• Avoid flatulent foods (cabbage, cauliflower, onions, etc.) and excessive intake of carbohydrates (bread, pasta, potatoes, rice…).
• Don’t drink carbonated drinks.
• Increase your intake of calcium (dairy products and derivatives) while you are taking corticosteroids
• Oral (cortisone), drink water (minimum 1.5 liters/day) and avoid alcoholic beverages.

Check more information: Gobierno de España

La entrada The importance of nutrition for health se publicó primero en Centro Andaluz Alfa-1.

Today is the day of physical exercise and for this reason we want to reveal the benefits of sport for your lungs.

Sport is usually related to weight loss, heart or lung health, and even reducing the risk of contracting diseases such as diabetes.

In short, playing sports improves the quality of life of all those people who practice it regularly.

Benefits of sport for your lungs

But how does it affect lung health?

Practice exercise to improve the health of your lungs

The heart and the lung are the organs that are activated when you start doing any physical activity.
The lungs are responsible for delivering oxygen throughout the body and removing carbon dioxide.
Meanwhile, the heart pumps oxygen to the muscles that are making a greater effort during exercise and demand more oxygen.
When this happens, breathing speeds up to 40-60 times a minute, corresponding to about 100 liters of air.
However, in a resting state, 15 breaths are produced per minute, ingesting approximately 12 liters of air.
When you are in good health, it is normal that you may be out of breath, but you breathe without difficulty, however, if the lung capacity is reduced, you may notice difficulty breathing.

Benefits of sport for your lungs

Why start exercising regularly?

Why start exercising regularly?

Regular exercise increases muscle strength and function.
When your body gets used to physical exercise, your muscles will need less oxygen to move and will produce less carbon dioxide.
Increase the performance of your lung capacity
Consequently, the amount of air needed to breathe in and out in a given exercise is reduced.
Training improves the circulation of your body and strengthens your heart, in addition, it will improve your physical and emotional state.
On the other hand, it reduces the risk of developing other diseases such as depression, stroke and cardio-pulmonary problems or diabetes.

Are there any health risks?

High-performance sports can lead to some respiratory problems such as asthma, since they are exposed to pollutants from the environment and by consuming more oxygen for a longer time, they are more likely to get asthma.
Can I exercise if I have a chronic respiratory disease?
This will definitely help you improve the symptoms of your disease.
It is normal for you to feel short of breath and it can be discouraging, if this happens seek guidance from a medical professional or physiotherapist.
Keep in mind that the first few days can be complicated, but the more you practice, the less difficulties you will have.

What happens if I feel like I’m suffocating when doing sports?

Intermittent exercise will help you to carry out a training adapted to your needs.
It consists of making intermittent stops of 1 or 2 minutes between exercise and exercise.
Remember to continue when you think you can’t anymore, it’s what makes you different from others.
Don’t give up the beginning is always the hardest.

Read more

What do we recommend?

• First step before exercising is a muscle warm-up.
• Don’t forget to stretch your limbs and neck.
• Get better every day, adding new exercises.
• Improve muscle strength by adding weight to your exercises.
• When you’re done, go back to stretching and breathing exercises to get back on track.
• If you smoke, quit tobacco.

La entrada Benefits of sport for your lungs se publicó primero en Centro Andaluz Alfa-1.

Determination of serum alpha-1 antitrypsin (AAT) concentration is usually the first step in investigating alpha-1 antitrypsin (AATD) deficiency.

The authors of this article analyze the reproducibility of their measurement to assess whether the variability between measurements was associated with markers or reactants of the acute phase of inflammation.

To do this, they retrospectively analyzed a sample of 255 individuals with chronic obstructive pulmonary disease (COPD) whose serum AAT levels were determined twice, at separate visits

Serious AATD

In patients with severe AATD, the observed variation in AAT levels from measurement to measurement is unlikely to alter the conclusions.

The situation is less clear in patients with intermediate DAAT, in whom borderline and even normal AAT levels are often found.

They finally concluded that although the 2 serum AAT levels were significantly correlated, the agreement was weak with wide limits on AAT concentrations.

Considering that serum concentrations of AAT below 1.13 g/L justify the initiation of further investigations to confirm DAAT, discrepancies between test-retest AAT levels led to reevaluation of 22% of patients wrongly classified.

This is not an assumption, considering that many studies have shown that the MZ and SZ genotypes confer a significantly increased risk of COPD in smokers.

Serum concentration variation

AAT is synthesized and secreted primarily by hepatocytes (≥80%), and in additional amounts by monocytes, macrophages, alpha and delta cells of the pancreas, type II alveolar epithelial cells of the lung, enterocytes, and other cells.

Being an acute phase reactant, plasma concentrations of AAT increase rapidly 2-3 times in response to inflammatory or infectious stimuli, accompanying C-reactive protein (CRP) and amyloid A, and this increase is maintained from 7- 15 days.

For this reason, the determination of the serum concentration of AAT will be carried out under basal conditions and it is advisable to measure the CRP.

Therefore, the importance of accurate determination of serum AAT concentration for COPD risk stratification, as well as for counseling purposes, even in intermediate deficiency, is clear.

Concordance in AAT level has relevance to the underlying genotype: the proportion of patients carrying 1 or 2 deficiency alleles was higher in those with 2 concordant AAT levels <1.13 g/l compared with those with discordant results .

Based on articles found in these webs.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8686854/

https://journal.copdfoundation.org/Portals/0/JCOPDF/Files/Volume8-Issue4/JCOPDF-2021-0228-Haillot.pdf

https://erj.ersjournals.com/content/50/5/1700610

La entrada Determination of the serum concentration of AAT se publicó primero en Centro Andaluz Alfa-1.

The magnificent initiative of the Alpha 1 Association to launch various workshops arises on the occasion of the World Week “Respiratory Care Week 2021”.

Medical professionals who are experts in pulmonology have participated in this workshop and recently diagnosed Alpha 1 patients have been invited.

Deepening the knowledge of the AATD

Here, patients are given the opportunity to approach professionals to better understand the DAAT and thus be able to calm the concerns that arise from the diagnosis of their disease.

In addition, other AATD patients share their experiences as a support tool.

Knowing the AATD is one of the first organized workshops of this event and has been given by Doctor Francisco Casas, coordinator of the Andalusian Center Alfa 1 and pulmonologist of the San Cecilio Clinical University Hospital.

Dr. Casas stressed the importance of providing clear and up-to-date information.

With the aim that Alpha 1 patients can understand this disease easily, as well as know the recommendations to have a healthy life and improve their quality of life.
Emphasizing the fact of avoiding exposure to cigarette smoke since it has a very negative impact on the lives of people with AATD.
After reaching this conclusion, two more workshops will take place.
In the following workshops they will talk about their genetic condition, as well as the serious liver and lung diseases that can develop later.
The information on these workshops comes from the official website Alfa 1 Spain.

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