If this is your first time reading this, it’s important to know the care, treatment and outlook has improved significantly in recent years. CF centres have also improved — many thanks to funding and advocacy from Cystic Fibrosis Ireland (CFI) — and there are strong support networks for people living with CF and their parents and families.
You are not alone on this journey. You will be cared for and supported by a team of doctors, nurses, and specialists who understand CF and are there to help both your child and your whole family.
2024 data about people with CF
What is CF?
CF is a multi-organ disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
Clogs the lungs and leads to life-threatening lung infections;
Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
What are the impacts of CF?
The impact of CF can vary from one person to another. There are some people with CF who live until their teens and there are others that live in to their 50’s. Ireland has among some of the most severe strains of CF and also has the highest incidence (per head of population) of CF in the world, with three times the rate of the United States and the rest of the European Union. However it is important that we now have a network of centres of expertise in place and dedicated multi-disciplinary teams lead by specialised CF consultants.
Symptoms of CF
People with CF can have a variety of symptoms, including:
Very salty-tasting skin
Persistent coughing, at times with phlegm;
Frequent lung infections;
Wheezing or shortness of breath;
Poor growth/weight gain in spite of a good appetite; and
Frequent greasy, bulky stools or difficulty in bowel movements.
Advances in Care and Therapies in Ireland
There are specialised CF centres of expertise in Ireland
Each centre has a multidisciplinary team, including for example a consultant, CF nurse, Dietitian and physiotherapist
New exciting drug therapies have been developed, called CFTR modulators, that will further improve survival and quality of life in Ireland
CF in Ireland Statistics
Ireland has the highest rate of CF per capita in the world, with approximately 1,400 children and adults in Ireland living with the condition.
About 33 new cases of cystic fibrosis in Ireland are diagnosed each year.
Because of new born screening, most babies with CF should now be diagnosed quickly
Around 60% of the CF patient population in Ireland is aged 18 or older.
The predicted median age of survival for a person with CF in Ireland is 63. This means half of the babies born today with CF are expected to live until they are 63.
