The Alfa-1 Association of Spain was born almost 20 years ago with the double objective of supporting newly diagnosed patients in their search for information and reference health specialists.
As well as accompanying those affected by this genetic condition in their daily struggle.
We know perfectly well that these are two very broad objectives for a Rare Disease Association, but it is in our spirit to fulfill them, getting closer to the alphas and their families every day.
We want to continue extending our networks to all the environments that affect us, from the hospital to the staff of our associates.
We join our efforts
Along this path, Alfa-1 Spain has one of its main allies in the Spanish Registry of Patients with AAT Deficit, REDAAT.
Without patient registration there is no research. And without research, a cure can never come. That is why we especially appreciate the work and this initiative of REDAAT. For us it is of vital importance to have accurate and complete information
The dissemination of scientific knowledge of the AATD
Understanding the Deficit is not always easy, and for those affected, it is essential to do so because only in this way can the means be put in place to reduce the risk of disease, and improve the mood and quality of life of the sick.
Alfa-1 de Spain makes all its resources available to those affected, their families and the medical community, to achieve early diagnosis, reduce the risks of suffering from ailments linked to AAT Deficiency and improve the expectations of patients.
Possible risks of AATD
Alpha-1 Antitrypsin Deficiency
Alpha-1 antitrypsin deficiency can have health consequences at various levels.
In lungs, liver and other organs such as the skin, vasculitis or fibromyalgia.
Symptoms are more common in people over 30 years of age, but they can appear earlier or later.
The first symptom is shortness of breath during daily activities.
Wheezing and lack of energy to exercise
How to know if you are alpha 1?
- You have a family history of alpha-1 antitrypsin deficiency.
- Testing is recommended if emphysema is diagnosed before the age of 45 or if it appears more in the lower part of the lungs.
- Chemical exposures can also cause the disease.
- If you have asthma and have real difficulty controlling it.
- Possibly if you have pneumonia or recurrent bronchitis.
- And in the worst case, if you suffer from unexplained liver disease.
What do we recommend?
- If the air quality is poor, as it is currently, we recommend that you stay home.
- Avoid being in areas with a lot of dust and wear a mask to handle cleaning products and to clean the dust.
- Avoid contact with people who have colds or flu while they recover.
- Walk at least 30 minutes a day to enjoy a healthy life.
- Avoid tobacco and excessive intake of alcoholic beverages.
Source: Guide for patients with AATD. Mariano Pastor