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The ONCE Foundation supports the project “Education equals Health in CF” of the Respiralia Foundation for people with Cystic Fibrosis, with €5,000.00 for the first half of 2021.
A consolidated project
The project “Education equals Health in Cystic Fibrosis” began its path in 2016, after a process of reflection on how we could get more out of the knowledge of the Autogenic Drainage technique of our professional team. After a deep analysis, we interpreted that training in a formal way was the basis for that better use.
Continuous assessment
Cystic Fibrosis involves performing, normally, two respiratory physiotherapy sessions a day and, in addition, doing them as productively as possible. In order to achieve this productivity at home for the users, a continuous assesment form was created with which the team of physiotherapists works in each session, training the user and evaluating his or her acquisition of practical knowledge.
Co-responsibility
It is a mistake to think that, because we are in the hands of a team of physiotherapists, we can relax when it comes to respiratory physiotherapy sessions or inhalations at home. At those times there is no member of that professional team to help us with the physiotherapy. Therefore, knowing the basics of the techniques and their correct application is the responsibility of the user or their parents, in the case of minors.
Greater autonomy
Excessive dependence on the physiotherapy team can condition the lives of people with Cystic Fibrosis. With this program we aim that they can manage their own treatment of their disease as autonomously as possible. This will allow them to travel with the peace of mind of knowing that they have mastered the techniques.
What is Cystic Fibrosis?
Cystic Fibrosis is a genetic, serious and degenerative disease that to date has no cure.
It mainly affects the respiratory, digestive, reproductive and sweat glands.
You can see the infographic published by the Cystic Fibrosis Spanish Federation in this link or see how Dani tells us what this disease is for him in this vídeo.
Currently, more than 2,000 mutations are known to cause the disease.
Statistics show that 1 in 5,000 people in Spain has Cystic Fibrosis (1 in 6,400 in the Balearic Islands) and 1 in 35 people is a carrier of a gene that causes the disease.
In the Balearic Islands there are 73 known diagnosed cases, but statistics speak of between 85 and 90 possible cases.
The awareness project of the Respiralia Foundation aims to raise awareness of this disease in order to discover those cases of people who have Cystic Fibrosis but have not yet been diagnosed.
#TogetheragainstCF
