Almost 12% of people living with cystic fibrosis (CF) in Ireland are over the age of 40, compared with just 4% in 2009, Cystic Fibrosis Ireland (CFI) has said.

According to CFI chief executive, Philip Watt, this is "huge progress in a relatively short period of time". However, more needs to be done to support people with the condition.

CF is an inherited disease that primarily affects the lungs and the digestive system. A defective gene causes the body to produce unusually thick sticky mucus that clogs the lungs and obstructs the pancreas, stopping natural enzymes from enabling the body to break down and absorb food.

Symptoms can include frequent lung infections, persistent coughing, wheezing and shortness of breath, as well as poor growth and weight gain in spite of a good appetite.

There are over 1,400 people in Ireland with CF and this country has the highest prevalence and the some of the most severe types of CF in the world.

"CF is becoming a more manageable chronic disease, meaning that people with CF can now dream to do things they never thought possible. They are going to college, taking up jobs, buying a home and starting a family. These are things so many of us take for granted, but for so long for the CF community, they were a daunting prospect," Mr Watt noted.

However, he insisted that there is "still a long way to go".

"We need to redouble our efforts to ensure that no one is left behind and that we have innovative treatments for the 10% of people with CF for whom current treatments are not approved," he said.

He also pointed out that many people with CF cannot conceive naturally and those wishing to avail of IVF treatment face huge financial costs, with three IVF cycles costing an average of over €16,000.

"Our Government needs to step up to the plate and provide fertility treatment supports for people with CF who wish to start a family," Mr Watt insisted.

Other issues that need to be tackled include shortages in specialised clinical staff in some CF centres.

CFI also highlighted the impact the COVID-19 pandemic has had on people with CF and their families. UCD carried out a study of 118 people with CF and 123 parents of children with CF late last year. Its interim findings show that the pandemic has had a major impact, with 74% of people with CF experiencing mental health issues. Some 71% of parents also said that their children had experienced similar issues.

Ruth Cahill's 12-year-old son, Harry, has CF. She was familiar with public health measures long before the pandemic arrived.

"I feel we have been living in a cocooning bubble since the day CF came into our world. We already had hand sanitiser in our car and in every handbag. We had masks in the glove compartment of the car. We moved tables in restaurants or left parties when someone coughed or sneezed near us.

"We missed Christmases, Easter celebrations, Paddy's Day, and birthdays over the years due to being in hospital or because we were concerned about catching a virus. Since the pandemic, everyone has been experiencing our daily worries. But life can still be wonderful and can still bring you daily joy. Life is for living and we need to keep going. We just need to make smart choices," she pointed out.

She said that the future for people with CF has been "transformed" in recent years.

"Twelve years ago, we feared for our child's future as not only did he have CF, but he had a very rare mutation that would be hard to fix. But last November, our son started a new drug, Kaftrio. We have seen in the past six months how life-changing this drug is," she explained.

CFI and other associations around the world have funded early real-world data studies on this new drug and Harry is part of this study.

"This data will pave the way to show smaller countries the importance of this incredibly expensive medication. This data will save lives. The future for people with CF is so much brighter," Ms Cahill added.

The condition is being highlighted to coincide with CFI's biggest annual fundraiser, 65 Roses Day (April 9). Money raised will support a range of services for people with CF including funding hospital facilities and staff, research, and patient grants for supports such as counselling, exercise equipment, fertility treatment, and transplant out-of-pocket expenses.

With public collections unfortunately cancelled for the second year running due to COVID-19, CFI is asking the public to support people with CF by donating online here.

*Pictured is Harry Cahill (12), who has CF, and his little sister Emily (10), from Maynooth, Co. Kildare.