Living with CF

With improved life expectancy and a better quality of life, there is an increased ambition for people with cystic fibrosis (PWCF) in Ireland to live more independent lives in a way that would not have been thought possible decades ago. 

In 2016, the board of Cystic Fibrosis Ireland (CFI) established an Independent Living Sub Group, which commissioned research into Independent Living. At the core of the research, and subsequent report, were two surveys.

The first was undertaken in 1998 and the second in 2017.  The results were generally very encouraging and showed that life has changed for adults with CF in the intervening two decades.  It showed that with sustained investment in better health services and with a good model of care and access to new and innovative therapies, the lives of people living with a long-term and fatal disease can be changes for the better in a relatively short period of time. 

Ireland still remains 'behind the curve' in supporting some aspects of CF care, including the right to Independent Living, which is enshrined in Article 19 of the UN Convention on the Rights of People with Disabilities. Ireland remains the only country in the EU not to have ratified this key international instrument, though CFI welcome the intent expressed by the Irish Government to ratify this key Convention in the very near future. 

The capacity for Independent Living is in many ways predicated on good CF care services in Ireland. 

The following are some of the key findings from the research carried out:

1. Adults with CF are aspiring to and are increasingly living significantly more fulfilled and independent lives than 20 years ag

  • In 1998, only 8% of those adults with CF surveyed were married compared with 26% in 2017.
  • In 1998, 87% of adult respondents with CF were single, compared with just 39% in 2017
  • 26% of survey respondents with CF aged 21 and over were parents in 2017. This question was not considered in the 1998 survey because it was unlikely any PWCF were parents.

2. Adults with CF are living longer and healthier lives, compared with 20 years ago.

3. CF is a fluctuating disease that can temporarily interrupt education, training and employment for a number of weeks.

4. Living arrangements for PWCF have changed dramatically in recent years. 

5. Third level education attainment has increased significantly in recent years. However, CF continues to impact on 'ability to perform' and causes college drop out. 

6. Many PWCF are now in a diverse range of full-time and part-time jobs and employers are more understanding than two decades ago.

7. A clear indicator of the aspiration towards independent living is increased car ownership, mobility and travel abroad. 


The report published by CF Ireland is one of the first reports worldwide to look at Independent Living and Cystic Fibrosis from a wide range of socio-economic perspectives, rather than focusing exclusively on health and medical issues. 

It is a time of home for people with CF and their families in Ireland. While much remains to be done, and there is no glossing over the severity of living with cystic fibrosis for many, one of the most welcome developments of recent years is that most adults with CF are living longer and healthier lives. 

Independent Living Report Download