MATIO FOUNDATION from 25.02 to 3.03.2019, is organising for the 18th time its annual public awareness campaign called National Cystic Fibrosis Weekwhich will be entirely devoted to raising awareness of cystic fibrosis, its symptoms, diagnosis, treatment and opportunities to live with the disease with dignity and for longer. Campaign slogan : #NeTtruth is to orient us to an illness that produces no outward symptoms, but ruins the patient's life in every dimension: physical, mental and family.
Genetic diseases are still of concern, therefore In this year's campaign we want to place particular emphasis on raising public awareness of the inheritance of the genetic disease cystic fibrosis. The inheritance of a normal or altered gene is always a random phenomenon, completely beyond our control. While medicine can cope with some genetic diseases, most treatments are still based on curing or alleviating symptoms in order to improve the quality of life of those affected, unfortunately, it is still helpless against the majority. One in 25 - 33* people are carriers of a gene that can cause cystic fibrosis. To illustrate, this is almost as many inhabitants as a large provincial city . The risk of having a child with cystic fibrosis if both parents are mutation carriers is 25%. The probability of passing on the defective gene to offspring is 50%.
Cystic fibrosis (cystic fibrosis), a disease that cannot be seen at first glance, is the most common genetic disease categorised as rare. Cystic fibrosis manifests itself primarily through very salty sweat, weight deficiency and frequent pneumonias that are difficult to treat. Patients live with the spectre of imminent and premature death, usually from respiratory failure. They spend almost half of their lives in rehabilitation, adhering to a strict diet and taking thousands of pieces of medication each year. In the final stage of the disease, they hardly leave their hospital bed.
The defective gene causes excessive production and thickening of mucus in the body, which interferes with the function of all organs that have mucus glands, primarily in the respiratory, digestive and reproductive systems. Symptoms of cystic fibrosis most commonly occur from the respiratory and digestive systems.
The thick and sticky mucus lodges in the bronchi and bronchioles and blocks the pancreatic ducts. In the case of the respiratory system, it impedes breathing, leads to recurrent bronchial infections and chronic inflammation, caused by bacterial growth, and ultimately to permanent damage to the lung tissue.
In the digestive system, however, it interferes with the pancreas' secretion of enzymes responsible for breaking down and absorbing fats, carbohydrates and proteins from food into the bloodstream. These enzymes do not reach the intestines, with the result that food is not properly and completely digested - the body does not receive sufficient nutrients to function properly. As a result, patients grow more slowly and gain less weight. In addition, the backlog of digestive juices in the pancreas destroys this organ, leading, among other things, to glucose intolerance and diabetes.
Genetic disease cannot be prevented. Therefore For 23 years, the Foundation for Helping Families and Patients with Cystic Fibrosis has been fighting to improve the quality of life of patients, running campaigns and information campaigns on this incurable disease and presenting diagnostic and treatment options. Throughout the entire period of the Foundation's activities, we have spared no effort to ensure that society recognises and understands the nature of this disease - disability.
For more on the activities taking place during the 18th National Cystic Fibrosis Week, visit MATIO Foundation
* Source: Dorota Sands, Cystic fibrosis a multisystem disease, Warsaw, Termedia 2018, p.60