From February 27 to March 5, 2023, the MATIO Foundation for the 22nd time organizes a social campaign under the name 22nd National Cystic Fibrosis Week. The campaign, which will be entirely devoted to the dissemination of knowledge about cystic fibrosis, its symptoms, diagnosis, treatment and the prospect of a longer life with this disease.
Campaign slogan: „CYSTIC FIBROSIS – UNDERSATND”
The use of treatment with CFTR Modulators has become a turning point in the treatment of patients affected by cystic fibrosis. Therapy gives patients a chance to significantly extend their lives and improve their quality. Therefore, we can talk about a revolution in the treatment of cystic fibrosis in Poland (from March 1, 2022). The 22nd OTM Campaign wants to show the society the current situation of cystic fibrosis patients in Poland, at all stages of life, whose quality should be definitely better in the near future. This knowledge will allow the average recipient to understand, at least to a minimal extent, this invisible disability and the problems that patients face on their way to achieving the so-called “normality of life”, so obvious for a healthy person. Currently in Poland, about 15% of patients do not have access to causal therapies, resulting from various reasons, including age (up to 3 years of age), no etched mutations or other contraindications. Cystic fibrosis is a genetic multi-system disease, but the most common cause of death is progressive changes in the lungs. Cystic fibrosis is a disease caused by inheriting a changed gene. The inheritance of a normal or changed gene is always a random phenomenon, completely independent of us. We usually find out that we are carriers of a damaged gene when we have a sick child.
Cystic fibrosis is the most common of the rare diseases. It is manifested primarily by very salty sweat, weight deficiency, frequent pneumonias that are difficult to treat. The damaged gene causes excessive production and thickening of mucus in the body, which disrupts the work of all organs that have mucous glands, especially in the respiratory, digestive and reproductive systems.
For 27 years, the Foundation for Helping Families and Cystic Fibrosis Patients has been fighting to improve the quality of life of patients, conducts information campaigns about this incurable disease and creates opportunities for using care and treatment. It fights for systemic changes that should take place regarding all rare diseases, including cystic fibrosis, i.e. the implementation of a comprehensive program for rare diseases. Throughout the entire period of the Foundation’s activity, we spare no effort to ensure that the society sees and understands the essence of this disease – disability.