If you’re reading this for the first time, or if your child has just been diagnosed with cystic fibrosis (CF), it’s important to know that care for CF has improved greatly in recent years. There are now exciting new medicines that treat the underlying cause of the condition, not just the symptoms. 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. Your child will be cared for by a multi-disciplinary team at your CF centre, including doctors, nurses, and other specialists who understand CF and are there to support your whole family.
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 Cystic Fibrosis
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.
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 51.
- For the most up-to-date statistics on CF in Ireland please see the CF Registry of Ireland Report
