The pilgrimage of Alpha 1 patients
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.
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