How to Treat CF
Cystic fibrosis is a multi-organ disease that requires comprehensive multidisciplinary care provided by CF-competent healthcare professionals. The treatment is time-consuming for both the patient and their family.
The treatment routine involves several daily home therapies, including inhaling various mucus-clearing medications, followed by lung physiotherapy to help expel mucus from the lungs.
For some patients, inhaled antibiotics and intravenous antibiotic therapy may be needed at times. With proper training from a nurse and doctor, these treatments can be administered at home by the patient or their family members, or alternatively, at the hospital.
Nutritional support, such as dietary supplements and tube feeding, may also be necessary to maintain good nutritional status in both children and adults with CF.
In recent years, thorough and interdisciplinary care has led to significant improvements in managing symptoms and extending life expectancy. With Kaftrio/Kalydeco now approved in Norway, living with CF has become somewhat easier for many.
Ongoing Care
Comprehensive and effective interdisciplinary ongoing care has significantly improved the management of symptoms and life expectancy for cystic fibrosis (CF) patients in recent years. Since CF is a progressive and complex disease, consistent and thorough care is crucial to slow and prevent disease progression. This ongoing care must be provided by healthcare professionals with expertise in CF.
Key components of CF treatment include lung physiotherapy and drainage, stringent infection control, aggressive antibiotic therapy for respiratory infections, digestive enzymes, and proper nutrition. For patients with advanced disease, lung transplantation may be considered as a last resort.
Recent advancements in medications, such as Kaftrio/Kalydeco, have revolutionized the treatment of the underlying protein defect that causes cystic fibrosis. These treatments, known as precision or personalized medicine, have shown significant benefits. For CF patients with the F508del gene mutation, Kaftrio/Kalydeco has led to improved lung function, reduced annual exacerbations, and a notable enhancement in quality of life.
Our specialist advisor, Tonje, addresses questions related to lung physiotherapy and CF in this podcast
Causal Treatment for Cystic Fibrosis
Life expectancy and future prospects
The average life expectancy for people with CF has increased considerably over the past 20 years, and children with CF born today are now expected to live their whole lives and be able to become grandparents. We can thank research and holistic treatment plans for this positive development.
Today, the focus is on education and career choice, professional activity, cohabitation and family and being able to have children of your own.
A large proportion of our adults with CF have children of their own. However, it is important to plan your own children early and carefully together with the health team. The positive development in survival and life expectancy is due to extensive research to improve the quality of CF care and a strong focus on interdisciplinary and comprehensive support measures in a life-course perspective, where daily and adapted treatment is central.
Individual variations
It is important to be aware that CF has individual variations in symptoms and disease development throughout life. The treatment is symptomatic and adapted to the individual's needs. Some have very few symptoms and notice little in everyday life, while others can have major consequences from the disease.
Specialized and Interdisciplinary Treatment Services
It is crucial for individuals with cystic fibrosis (CF) to have regular check-ups with interdisciplinary healthcare professionals specialized in CF within the specialist healthcare system.
The Norwegian Centre for Cystic Fibrosis The Norwegian Cystic Fibrosis Center (NSCF) at Oslo University Hospital, Ullevål, is the central CF competence center in Norway and handles inquiries from patients, relatives, and healthcare professionals. NSCF offers specialized and multidisciplinary care for CF for both adults and children. NSCF also monitors and follows up with infants who are identified through newborn screening as possibly having cystic fibrosis, within the health regions of Southeast, Central, and North Norway.
Haukeland University Hospital is responsible for following up with infants identified through newborn screening within the Western Norway health region.
Our Services for Individuals and Families with Cystic Fibrosis
At the Norwegian Cystic Fibrosis Association (NFCF), we are here for those living with the disease and their relatives. We have elected representatives and peer supporters available if you have questions or need someone to talk to. Our four regional branches organize events across the country where you can meet like-minded people, share experiences, make new friends, access CF research updates, or simply have fun. We also have closed Facebook groups for families and adults, where membership must be approved. Feel free to contact us at facebook Facebook or via email at redaksjonen@nfcf.no if you have any questions!
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