New report finds better outcomes for people with cystic fibrosis

People with cystic fibrosis are living longer and have a better quality of life than 20 years ago, a new report from Cystic Fibrosis Ireland has found.

Cystic fibrosis is an inherited, chronic disease that affects the lungs of about 1,300 children and adults in the Ireland. 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 infections.

Twenty years ago, adults with cystic fibrosis tended not to be in employment, or have children and many lived at home being cared for by families.

But according to the latest research from Cystic Fibrosis Ireland, the last two decades have seen significant change including new medications and the possibility of double lung transplants which have opened up the prospect of independent living and parenthood.

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The report is largely based on two surveys which were carried out in 1998 and 2017. It found adults are now living significantly more fulfilled and independent lives than 20 years ago. For example:

• In 1998, only 8 percent of those adults with cystic fibrosis surveyed were married, compared with 26 percent in 2017.
• In 1998, 87 percent of adult respondents were single, compared with 39 percent in 2017.
• In 1998, some 38 percent were in or had completed third level education. By 2017 those who had completed third level education amounted to 49 percent .
• In 1998, some 74 percent of respondents lived with their parents in their parents' house. By contrast in 2017 this figure had reduced to 43 percent.
• 26 percent of respondents aged 21 years-of-age or over were parents in 2017. This question was not considered in 1998, because it was thought unlikely any were parents.
• The median age of death in Ireland of people with cystic fibrosis had increased to 30 years of age by 2015 compared with only 17 years of age in 1998, an increase in 13 years over a period of roughly two decades.

However the report noted that considerable obstacles to independent living remain. These include the problem of being unable to access mortgage protection insurance which makes it difficult to aspire to home ownership.

Difficulties also exist in funding the adaptation of homes from local authorities and the illness causes a lot of people to drop out of college.

The report was commissioned to mark Cystic Fibrosis Ireland’s 65 Roses Day, which takes place on Friday, April 13th.