Living with CF | Cystic Fibrosis

Thanks to improved treatments, people with pwCF in Ireland are now able to live far more independent lives than would have been possible a few decades ago. Since the roll out of the highly effective modulator therapies, and further investment into CF research, many in the community are living longer and healthier, and are looking forward to planning for their future.

While the outlook is more positive now, CF remains an incredibly challenging condition. Some pwCF in Ireland do not have access to modulators, cannot tolerate them, and living well with CF takes significant efffort. The Living Well programe is detailed below and is open to anyone living with a long-term or chronic condition, while the Independing Living report (below) details how lliving with CF has changed in the last decade.

For more informtion on living with CF, please get in touch with our member services team on memberservices@cfireland.ie

Living Well

We are delighted to signpost into the Living Well programme offered by the HSE. This programme is now open for registrations which can be made on the HSE website.

Living with a long-term health condition can be challenging. The Living Well programme is a free 6-week self-management programme for adults with chronic or long-term health conditions and offers you the skills and confidence to live well with your long-term health condition.

The programme was originally developed at Stanford University and runs over a 6 week period are 2 ½ hours in duration with an option to participate in person or online.

Independent Living - 2016 to 2028

In 2016, CFI set up an Independent Living Sub-Group to look into how people with CF live independently. This included commissioning research based on two surveys — one carried out in 1998 and another in 2017.

The results were very positive. They showed that life has changed greatly for adults with CF over the past 20 years. With continued investment in healthcare, better models of care, and access to new treatments, people with CF are living longer, healthier, and more independent lives.

However, at the time of publication, Ireland was still behind other EU countries in fully supporting independent living for people with disabilities, including those with CF. Independent living is recognised in Article 19 of the UN Convention on the Rights of People with Disabilities, which Ireland was not then officially approved in Ireland. This was ratified in 2018. Ssince then, even more progress has been made and CFI will be commissioning a follow up report shortly

The first Independent Living Report found the following:

Good CF care is central to making independent living possible.

Key findings from the research:

More adults with CF are living independent, fulfilling lives.
- In 1998, only 8% of adults with CF were married, compared with 26% in 2017.
- In 1998, 87% were single; by 2017, that had dropped to 39%.
- In 2017, 26% of adults aged 21 and older were parents — a question that wasn’t even asked in 1998.
People with CF are living longer and healthier lives than they were 20 years ago.
CF can still affect daily life, sometimes interrupting education, training, or work for a few weeks at a time.
Living arrangements have changed, with more people with CF living independently.
More people are completing third-level education, though CF can still make it harder to keep up with studies.
Employment opportunities have improved, with more people working full-time or part-time, and employers being more understanding.
Increased car ownership, independence, and travel show a strong move toward independent living.

This CFI report is one of the first in the world to look at independent living and CF not just from a medical view, but also from social and economic perspectives.

It’s an encouraging time for people with CF and their families in Ireland. While challenges remain, one of the best developments in recent years is that most adults with CF are now living longer, healthier, and more independent lives than ever before.