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The “la Caixa” Foundation approves a grant of 12,900.00 € to the project “Educate is Health in Cystic Fibrosis” of the Respiralia Foundation.
The objective of the project “Education equals Health in Cystic Fibrosis”.
Cystic Fibrosis is a disease that requires daily treatment, both medication and respiratory physiotherapy and endurance exercises. The project “Education equals Health in Cystic Fibrosis” offers the necessary tools for the users of this service to manage the treatment of their disease in the most autonomous way possible.
Improving quality of life
Knowing how to apply the Autogenic Drainage technique, inhaled therapy and hygienic measures correctly provides freedom from excessive dependence on the physiotherapy team. Thus, leisure, work or study trips can be made with the peace of mind of knowing that respiratory physiotherapy sessions will be performed productively anywhere.
Co-Responsibility
A person with Cystic Fibrosis should have two physiotherapy sessions a day. That means 14 weekly sessions, so the responsibility for the treatment to be productive always lies with the person who has the disease and not with the professional team that only treats him or her once or twice a week. Therefore, the professional team has the responsibility to train the person using the service, but this person has the responsibility to learn and apply the techniques correctly during the week.
The continuous evaluation system
This project is based on continuous evaluation. For this, through a form containing all the aspects to be covered during the training, it is possible to monitor the evolution of this training. The assignment to practice at home what has been learned in the session with the professional team and the demonstration of what has been practiced in the following session is a way to improve adherence to the treatment, as well as to improve the productivity of the sessions.
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 2000 mutations are known in the gene that is defective in people with Cystic Fibrosis, although only about 150 mutations are described as causing 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 (1 in 40 in the Balearic Islands).
In the Balearic Islands there are 76 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.
