It is important to note that if you are reading this for the first time or if you have just been told that your child has cystic fibrosis (CF) that you know that there have been very good advances in CF care in recent years. These advances include exciting new drug therapies that treat the underlying cause of disease; improved CF centres, including those funded by or through the advocacy of CFI and good support networks for parents and people with CF. We are here to help you and you will be looked after by a multi-disciplinary team in your CF centre. 

Cystic fibrosis 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. 

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.
What is Cystic Fibrosis
Newborn Screening
What is Cystic Fibrosis
Genetics

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.
 

CF in Ireland Statistics

  • 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 
CFRI Annual Report Download

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
Daily Life for a person with CF Download
CF Treatments and Therapies Download

For further information you can contact the Member Services Team as follows:

Name Position Email Phone
Samantha Byrne Member Services Senior Co-ordinator sbyrne@cfireland.ie 01 496 2433 ext 200
Caroline Heffernan CF Advocate cheffernan@cfireland.ie 087 932 3933
Rory Tallon CF Advocate rtallon@cfireland.ie 087 932 3930