Mukolife is a virtual project involving teenagers suffering from cystic fibrosis. It is a place where young people suffering from cystic fibrosis share their opinions, praise their successes and motivate them to continue their actions. Because who better understand a teenager suffering from cystic fibrosis than a peer with the same disease?
Due to the specificity of cystic fibrosis and its symptoms, people living with this disease have a difficult opportunity to meet. The web is therefore the best place where they can cultivate friendships, talk about their dreams and support each other in the fight against disease. The Mukofiles project involves teenagers from all over Poland, whose behavior and attitude to the disease set an example for other patients on how to live with cystic fibrosis.
People involved in the project divide their lives between pursuing their interests, learning and regular rehabilitation. In addition, they find strength not only for their own daily fight, but also to help and set an example for others. It must be remembered that the teenage period they are in is, on the one hand, extremely interesting, creative and passionate, and on the other hand, difficult.
- Step by step begins "entering adulthood". The first independent decisions, a rebellion against the environment, teachers, school, parents and disease. Displacing it and abandoning therapy may have serious he alth consequences. At this age, peers, friends from the yard, and schoolmates become authorities for teenagers. They try to impress them, imitate them and listen to them in many ways. That is why it is important for children with cystic fibrosis to help each other, by example and to motivate each other in actions - says psychologist Urszula Borawska-Kowalczyk
from the Institute of Mother and Child in Warsaw.
Cystic fibrosis is the most common chronic genetic disease
Cystic fibrosis is a disease so complex that its symptoms can vary greatly. To date, over 1,600 different mutations of the CFTR gene, responsible for the symptoms of cystic fibrosis, are known. They most often occur in the respiratory and digestive systems. Thick and sticky mucus lingers in the bronchi and bronchioles and blocks the pancreatic ducts. In the case of the respiratory system, it makes breathing difficult, leads torecurrent bronchial infections and chronic inflammation. In the digestive system, it disrupts the process of secreting enzymes responsible for the breakdown and absorption of fats, carbohydrates and proteins from food into the bloodstream. As a consequence, the body does not receive enough nutrients to function properly.
Cystic fibrosis treatment - stick together!
There is no effective cure for cystic fibrosis so far, but the development of medicine allows for a continuous improvement in the quality of life of patients and increases its length. Currently, over 1/3 of people suffering from cystic fibrosis in Poland are over 18 years old. The Mukofile project (mukolife.pl) is aimed at people suffering from cystic fibrosis, their families and relatives. Ultimately, it will be addressed to three age groups: 6-12 years old, 13-17 years old and 18+. The portal presents information about the disease in a simple and condensed way, also for people who did not know it before. Many attractive and interactive activities for patients have been prepared, e.g. the MukoTimer application for smartphones. By joining the Mukolife community on Facebook, patients will be able to stay in touch with each other, exchange opinions, advice, share success stories, talk about their lives, support each other and give each other positive examples.
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