On the Mukolife website, so far addressed to teenagers and adolescents with a severe genetic and so far incurable disease – cystic fibrosis, a section for parents of young children diagnosed with this disease has been created.
In this virtual meeting place, they will be able to exchange experiences, advice, and provide mutual support and assistance. On the website you can find: practical information on caring for a child with cystic fibrosis and methods of preventing its exacerbations, as well as advice on how to lead an active life despite the toddler’s disease, and legal and social advice. Parents can also consult experts from the Cystic Fibrosis Treatment Clinic of the Mother and Child Institute in Warsaw, which took the honorary patronage over the project.
“Parents usually find out about a month and a half after giving birth that a child has cystic fibrosis. This is how long it takes to screen the diagnosis of the disease. It is a shock for them, they have to learn to live with the disease quite quickly in order to best help their child ”- says Dr. Robert Piotrowski, pulmonologist at IMiD in Warsaw.
The website “Mukolife” (www.mukolife.pl) is to help them. By entering it, you can learn about the stories of people who have already passed the stage of “getting used to” the child’s disease and now they can support and motivate other parents, show them that cystic fibrosis does not have to dominate the whole family life.
“Emotions after hearing a diagnosis cannot be described until you feel them yourself. In the beginning there is fear, breakdown, disbelief, great pain. They are the greater the less we know about the disease. Only the most dramatic facts remain in the mind: an incurable disease, ”says the ambassador of Mukolife, Magda, whose daughter suffers from cystic fibrosis.
According to the psychologist from IMiD Urszula Borawska-Kowalczyk, each parent experiences these moments in their own way. “Some people mobilize to action quickly, others withdraw from the disease, they want to forget about it, they blame themselves, their partner and the world around them. (…) ”- explains the specialist.
In her opinion, in these difficult times, it is important to support people who know what life with cystic fibrosis is. “They will not only be able to understand other parents, but also provide them with advice, support, information” – adds the psychologist.
Cystic fibrosis is the most common chronic genetic disease. It is caused by a mutation in the CFTR gene, which codes for a protein that creates a chloride ion channel in the cell membrane (more than 1900 mutations in this gene are currently known).
This has the greatest impact on the functioning of the respiratory and digestive systems. As a result of the mutation, thick, sticky mucus is deposited in the bronchi, lungs and pancreatic ducts. As a result, patients experience shortness of breath, chronic cough, frequent recurrent respiratory infections, and chronic inflammation of the lower respiratory tract. Disturbances in the secretion of pancreatic enzymes, which are responsible for the breakdown of fats, proteins and carbohydrates, in turn lead to problems with the absorption of nutrients, their deficiency and underweight.
At the current stage of medical development, the disease is incurable, but thanks to appropriate therapy and arduous pulmonary rehabilitation, patients can significantly extend their life and improve its quality.
Currently, there are approximately 1600 cystic fibrosis patients registered in Poland, of which over a third are over 18 years old.
The “Mukolife” project was created in cooperation with: MATIO of the Foundation for Help for Families and Cystic Fibrosis, the Polish Society for Fighting Cystic Fibrosis and Roche.
Its creators plan to launch a section for children with cystic fibrosis aged 6-11 and for sick adults aged 20 and more. (PAP)