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From November 15 to 21, 2010, the Cystic Fibrosis European Association organizes the 2nd European Awareness Week of Cystic Fibrosis to improve the quality of life and the life expectancy of people with this illness.
With this Awareness Week, the European CF Association and the associations from 38 european countries, including the CF Balearic Association and the Respiralia Foundation, want to make more people aware of this illness and make possible that all people with CF can receive the treatment they need.
Toward equality of access to the appropiate care for people with Cystic Fibrosis in Europe
Precocious diagnosis and treatment, and an appropiate higiene and follow up can prolong and save lifes, as well as avoid some health expenses in the future. Therfore, we demand to the european and national authorities at this 2nd European Awareness week of CF to make their best to allow an equal access to the proper health care services, as it is established at the European Consens about the CF Treatment Rules.
Next November 10, the European Association of Cystic Fibrosis will talk about this topic at a meeting in Brussels with members of the European Parliament, and during the days 15 to 21 they will organize awareness campaignes in the whole Europe.
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.
The treatment for Cystic Fibrosis includes antibiotherapy, a healthy and hypercaloric nutrition and respiratory physiotherapy combined with endurance exercises.
You can see the infographic published by the Cystic Fibrosis Spanish Federation in this link (Spanish version) or see how Dani tells us what this disease is for him in this vídeo (Spanish version).
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.
