People with cystic fibrosis (CF) are living longer thanks to healthcare advancements, but still face “significant barriers” to achieving life milestones, such as owning a home or securing a pension.
Cystic Fibrosis Ireland said the last 10 years alone had seen significant improvements in healthcare standards and the availability of new medication, but more work needs to be done to support people with CF and their families.
Currently, 62% of people with CF in Ireland are over the age of 18, and 15% are over the age of 40, which represents a significant shift in the demographic.
The charity’s chief executive Sarah Tecklenborg said: “We want to see advancements in healthcare, and sustained healthcare delivery for people with CF as they age.
“What we’re seeing is an increasingly complex picture of what it means to be older with CF.
"Cystic Fibrosis Ireland is investing in research to try to understand the picture of ageing with CF.”
Cystic fibrosis is a multi-organ disease that primarily affects the lungs and digestive system.
In recent years, advances in treatment have meant people are living longer with the condition.
According to the HSE, about half of the people who have cystic fibrosis will live past the age of 40.
Ms Tecklenborg said its research has shown that increased numbers of people with CF are in employment, with three in five working full time.
However, over a quarter (28%) remain unable to work due to their condition, and almost half of those living with the condition struggle to pay their monthly bills regularly, she said.
“We also know that people with CF have significant barriers to their life goals, such as home ownership, and the availability and access to financial products and pensions,” Ms Tecklenborg said.
“The vast majority are having either significant difficulties in obtaining a mortgage or being turned down for mortgage protection.
We know now that people are living longer, that they will continue to live longer lives and they need to be able to access those financial products.”
As part of its fundraising efforts, the charity is holding 65 Roses Day this Friday with volunteers selling purple roses in Dunnes Stores, shopping centres and other outlets nationwide.
It hopes to raise €300,000 to fund supports and services for people with CF.
Emma Hayward, whose five-year-old daughter Izzy has CF, said she was diagnosed at six weeks of age and that she's doing "really well" on new medication that she started on last year.
"People can live much healthier, longer lives, but there's still a certain amount of the population with CF that don't have access to that medication," she said.
Ms Hayward said that CF is impacting Izzy in ways beyond just her lungs, as she is on enzyme replacement therapy due to the impact on her digestive system.
"But she’s in school, started junior infants in September, and she’s doing really well," she said.
"When you look at Izzy, you would never know that she has cystic fibrosis. But behind the scenes, there’s a lot of work to keep Izzy well.
"There’s still a lot of work to do with cystic fibrosis. There’s no cure yet. There are big improvements, but there’s still a lot more to do.”
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