In her Junior Cert year, Gwen Healy spent just two months in school — the rest of the time she was in bed; either at home or in the hospital, and often for weeks at a time.
She performed well in the exam all the same, and, although she also missed a lot of school during her Leaving Certificate programme she again passed with flying colours, securing a place on her desired Early Childhood programme at UCC.
And despite being on oxygen 24/7 in her final year of college — and despite having to spend several months studying from home— she graduated with first-class honours.
The hurdles, though, kept on coming— in 2010, at the age of 23, she had to take several months out of a demanding master’s degree programme to get a double lung transplant.
Gwen Healy simply pressed ‘pause’ for a few months — and then pressed on, finishing her thesis and getting on with her life.
So yes, cystic fibrosis has dominated this Kerry woman’s life — but she has never let it beat her.
Now 30, married and living in Turners Cross in Cork, and working as a community employment supervisor with the Mahon Community Development project, Gwen has spent much of her life determinedly working around the condition, with which she was diagnosed at the age of four.
“I didn’t get involved in team sports as much as I’d have liked — GAA, for example — because it would have put me under too much pressure physically.
“I had a strict daily regime of nebulisers, medication, and physiotherapy and when I was growing up I had to do all of this before I went to school which meant early starts.
“Every few months my chest would get bad so I would have been in hospital and I missed school for up to three weeks at a time,” she says.
In 2008, in her final semester of college, Gwen became very ill: “I was in hospital for seven weeks and was put on full-time oxygen which was very scary.”
She spent two years on the active list for a transplant, which she describes as “quite stressful and limiting”. The transplant, however, has given Gwen a whole new lease of life. She is a lot more active and regularly enjoys walks on the beach, as well as swimming, cycling and doing weights. Of course, she still has to mind herself, and has a range of daily medications to take, but, she says, life is good.
Turning 30 last year was a big milestone she’s proud of, as is completing her Masters degree in Applied Social Studies at UCC and getting married to her sweetheart of nine years, Padraic, last November — she’s currently looking forward to a honeymoon cruise in the Mediterranean cruise next August.
“I’m still taking medication and nebulisers, so my condition is still very much a major part of my life, but thankfully, post-transplant, it no longer dominates everything I do!
“I’ve had enough of sitting around on couches and hospital beds,” declares Gwen, who is one of about 1,200 adults and children living with cystic fibrosis in this country today.
Ireland has the highest prevalence of the condition in the world, with one in every 19 people believed to carry a copy of the altered gene that causes it. According to European Registry projections, the number of adults with CF in Ireland is expected to increase by 75% by 2025, and the number of children by 25%.
“Ireland is the world’s cystic fibrosis centre. With approximately 1,200 people with cystic fibrosis, our incidence of the disease per head of population is higher than anywhere else globally. We also have some of the most severe type,” says Jenny Dixon from RTÉ’s Fair City, an ambassador for Cystic Fibrosis Ireland.
CF causes a build-up of thick, sticky mucus, which can clog airways and harbour harmful bacteria. Symptoms reported by people with CF vary significantly in severity from mild to debilitating, while the most common symptom is a recurrent chest infection, which results in lung damage, with the majority of deaths occurring through respiratory failure. There is a high prevalence of CF in Europe, with the highest prevalence in Ireland, which is almost three times the average rate in other EU countries and the US.
“The impact on the lives of so many people with cystic fibrosis is really heart-wrenching. The not knowing if you’re going to have a good day or a bad day, whether you’re going to pick up an infection and the sheer effort to simply be able to breathe — it’s devastating.”
Next week sees Cystic Fibrosis National Awareness Week, from April 10-16. It’s being hosted by the Cystic Fibrosis Ireland charity, which is Ireland’s national charity for people with the disease — the charity’s flagship fundraising appeal, 65 Roses Day — so-named after the way in which young children are first taught to say the words “cystic fibrosis” — takes place on Thursday, April 13.
Volunteers will take to the streets and shopping centres selling Purple Roses with the aim of raising €100,000, which will go to fund the development of dedicated healthcare facilities, research, counselling and much-needed grant supports for people with cystic fibrosis in areas such as transplant assessment, fertility and bereavement.
One might assume Gráinne Fahey would never want to see the inside of a hospital again — she was diagnosed with cystic fibrosis at the age of three and has been in and out of hospitals ever since — but she’s studying to be a radiographer.
However, the demands of her condition means it has taken the determined 25-year-old from Borrisoleigh, Co Tipperary seven years to complete three years of her four-year degree at UCD.
“It does put roadblocks in your way — you have to find an alternative route around a lot of things,” says Gráinne, who also suffers from chronic fatigue syndrome.
She’s currently taking a year out before embarking on the fourth, and what she says is the most demanding year of her degree.
“It’s a very heavy year,” explains Gráinne, whose younger brother also has cystic fibrosis.
The university student undertakes a daily routine of nebulisers and physiotherapy exercises and attends hospital two or three times a year to receive treatment for infection.
In addition, she attends University Hospital Limerick for weekly physiotherapy sessions and works hard to keep her CF at bay, attending the gym several times a week.
Gráinne is currently living at home on the family farm where they have livestock and grow mushrooms. She keeps busy fostering two donkeys from the donkey sanctuary in Cork, bottle feeding a calf, and preparing for a welcome 10-day break in the US later this month.
“I’m heading to Boston on April 10 to visit a friend who is over there and in college!”
Yes, she says, having cystic fibrosis is hard: “You can look fine and be able to go out and meet your friends one day but the next day you can be wrecked — you may look find but on the inside you may not be feeling well.”
But Gráinne refuses to let it defeat her: “You can lead a normal life but you just have to work at it!”
- Members of the public can support people with cystic fibrosis on 65 Roses Day by buying a Purple Rose for €2, completing a 65 Roses Challenge. Text “65 Roses” to 50300 to donate €2 or donate online at www.65rosesday.ie