A report has shown major improvements in the quality and length of lives of people in Ireland living with cystic fibrosis.

It says that sustained investment in better cystic fibrosis services and medications in recent years, has made a big difference to those living with the condition, but there is also much more to be done.

The report from Cystic Fibrosis Ireland - 'Independent Living and Cystic Fibrosis' - looks at changes over the period 1998 to 2017.

Around one quarter of the adult population with cystic fibrosis took part in surveys during this time.

The results showed that:

  • In 1998, adults with CF were not expected to be in any employment. Last year, 54% of respondents were in full-time, or part-time work.
     
  • In 1998, 74% of respondents lived with their parents, but by last year this figure had reduced to 43%.
     
  • In 1998, adults with CF were not expected to have children of their own. By last year, due to better health and the introduction of IVF, 26% had children.

More people with cystic fibrosis are now married, have third-level qualifications and are living much longer.

CFI Chief Executive Philip Watt said improved rates of double lung transplantation and access to new ground-breaking drugs, such as Kalydeco and Orkambi, have helped improve the lives of people.

But he said more improvements were needed, such as a dedicated cystic fibrosis inpatient unit at Beaumont Hospital, which the Government had promised would start operating last year, and dealing with understaffing of existing major CF centres.

The Chairperson of CFI has said life has changed, both in terms of quality and quantity, for those living with cystic fibrosis.

Speaking on RTÉ's Six One News, Patricia Duffy Barber said adults living with cystic fibrosis should be able to move forward into employment, but that systems should respond accordingly.

She said that fertility support for those living with cystic fibrosis is important and one of the recommendations of today's report.

She said one of the main barriers for those with cystic fibrosis seeking a mortgage is the ability to access mortgage protection.

The report is being published ahead of Cystic Fibrosis Ireland's 65 Roses Day, which takes place on Friday 13 April.

The day is so-named from the way in which children are often first taught to say the words "cystic fibrosis".