Passion Is Independent Of The Disease, Lifespan – Is.
Mucoviscidosis – The Right Treatment, A Better Life.
(2010.02. 22-28)

The situation of adult CF patients and the challenges lying ahead of the health care system in Poland in order to provide them with a complex health care – these are the leading topics of the IX National Week of Cystic Fibrosis opening on February, 22nd. The event is organized by Polish Cystic Fibrosis Foundation MATIO Foundation, with support of Roche Poland and the National Fryderyk Chopin’s Society. IX National Week of Cystic Fibrosis is an integral part of the European Day Of Rare Diseases on February 28th.

As we are celebrating The Chopin’s Year, the campaign refers to Fryderyk Chopin’s biography. The artistically prolific life of this outstanding artist was tormented by a chronic disease, which - some experts believe - must have been Cystic Fibrosis. The life of Fryderyk Chopin, against all limitations of a chronic disease, can be an inspiring example for many. The adult victims of Cystic Fibrosis (CF or mucoviscidosis) try to live a normal life, against the limitations set by the disease. Many of them graduate school, take up studies, a career, satisfy their dreams and passions. It is only possible with the right diagnosis system and early treatment, which can prolong the lifespan and improve the quality of life.

Cystic Fibrosis is an incurable genetic disorder. For a long time it was regarded as a childhood disease. However, the percentage of adult CF victims is systematically growing. In Western Europe the lifespan for CF patients has extended to over 40 years. Unfortunately, in Poland the life duration is only half of that. The difference results mainly from limited access to complex specialized health care, for example to therapy with antibiotics, isolated hospital space, physiotherapy, rehabilitation, psychological support.

Cystic Fibrosis is a multi-organ disease causing irrevocable changes in the body which get complicated with age (among others, inflicted diabetes, liver disorders, problems with the breathing tract), therefore it requires a complex treatment. In many countries a common way to treat heavy breathing disorders is a lung transplant.

During the campaign we planned a series of various information and education activities: press conference, free telephone medical consultations, posters and information leaflets distribution, workshops and education meetings, charity actions and the survey of the CF knowledge level.
More detailed information on the campaign can be found at: www.mukowiscydoza.pl