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Saturday 30 September 2023 Dublin: 12°C

# Cystic Fibrosis

This year
2023
HSE approves use of life-changing Cystic Fibrosis drug for 35 children previously excluded
Minister for Health Stephen Donnelly said it was a “very welcome development”.
Last year
2022
'Intensive work' ongoing to give 35 children with Cystic Fibrosis access to life-changing drug
Donnelly said it is important to him ‘that children get access to the drug that they need’.
Opinion: 'At 27, with no children, cystic fibrosis and now cervical cancer - my world crumbled'
Aoife Rafter details how her CF and a cancer diagnosis have brought her to a place of gratitude and resilience.
All time
Opinion: 'A new cystic fibrosis drug means I'm the healthiest I've been for 20 years'
Ahead of 65 Roses Day tomorrow, med student Bevin Murphy outlines the tough year she’s had as a person with CF, and how a new drug has changed everything.
Department of Health can't give timeline for rollout of publicly-funded IVF
Expert says linking IVF funding with the commencement of legislation is a ‘way of putting it off’.
PPE grant now available for people with cystic fibrosis
The grant of €100 per applicant is available from Cystic Fibrosis Ireland.
Cocooning through Covid-19 with CF has taken focus but I have never felt better
Benat Broderick, who has cystic fibrosis, has been cocooning at home and says he’s grateful for the time to focus on his health and wellbeing.
Five weeks in lockdown in hospital is tough - and the food makes it worse
A patient with cystic fibrosis, for whom nutrition is key to health, shares her hospital food experience.
Over €300,000 raised for CF Ireland through 65 Roses fundraising efforts
The 65 Roses fundraising campaign would usually see community-hosted events take place across the country.
Living with cystic fibrosis in a pandemic is tough, but we have lived this for some time
Patricia Duffy-Barber, Chairperson of Cystic Fibrosis Ireland says people CF are nervous, but they’re doing their best to get through.
Opinion: 'Covid-19 is the world's biggest fear. Welcome to my world.' Diary of a man with Cystic Fibrosis
Trevor O’Sullivan documents his challenges as a person with CF during the Covid-19 crisis.
Opinion: As a Cystic Fibrosis patient, the coronavirus is a major worry for me
Benat Broderick writes about his concerns regarding Covid-19.
Record number of patients were hit by dangerous hospital superbug last year
Over 660 new patients contracted the antibiotic-resistant bowel bug CPE from January to November – with 13 outbreaks currently across the country.
'A most wonderful Christmas present': HSE to reimburse cost of new cystic fibrosis treatment
About 1,200 children and adults have Cystic Fibrosis in Ireland.
New approach to treating cystic fibrosis could reduce the need for lung transplants, RCSI study finds
Cystic fibrosis is a genetic disease that affects around 1,300 children and adults in Ireland.
Irish couple facing deportation in Australia because son has cystic fibrosis granted residency
The couple appealed the decision to refuse them residency which prompted intervention from a government minister.
Irish couple facing deportation from Australia because son has cystic fibrosis lose appeal
The couple are holding out hope that Australia’s Immigration Minister will intervene.
We need to change the disabled parking logo - so people stop telling me that I'm not disabled when I am
‘I find these interventions by members of the public quite insulting and extremely embarrassing,’ writes cystic fibrosis advocate, Benat Broderick, 15.
'Thinking of my donor made me really determined to achieve': How a double lung transplant changed this DCU lecturer's life
Greg Foley had to get a double lung transplant after complications from his Cystic Fibrosis.
Opinion: At 12 I started taking Orkambi as a trial drug and it transformed my life
It was scary starting a drug trial for my cystic fibrosis. We didn’t know how I would react but thankfully my breathing and energy levels improved, writes Benat Broderick (15).
'I was studying to be a fitness coach when I needed a double lung transplant'
Luke Doherty was added to the transplant waiting list when one of his lungs collapsed.
'If I didn't take part in a clinical trial, I would have died'
Patients in Ireland are being encouraged to ask their doctors about clinical trials.
Over 2,000 people sign up for organ donor cards in light of Orla Tinsley documentary
Tinsley was on the lung transplant waiting list in the US for nine months.
'Nothing short of a miracle': Irish CF campaigner on recovery after double lung transplant
Orla Tinsley told RTÉ’s Six One News that she feels like a “new woman”.
'She was just so ill, it was horrible to see my child like that'
Darcy Grainger is one of about 1,300 people in Ireland who have cystic fibrosis.
'I spend three hours a day on a nebuliser, but exercise helps my mental health'
Ireland has more cases of cystic fibrosis per head of population than any other country.
'We're terrified': Parents of sick children to hold vigil outside Crumlin hospital over trolley crisis
One mother spoke to TheJournal.ie about the battle her child with Cystic Fibrosis has faced.
'We've come so far': Orkambi campaigners hail next step as children can now get 'life-changing' drug
Children between the ages of six and 11 will now be able to access the drug in Ireland after yesterday’s announcement.
'I have shiny new lungs' -Irish Cystic Fibrosis activist gets double lung transplant
The journalist and Cystic Fibrosis activist has long campaigned for more awareness about the condition.
Christmas without loved ones: 'Try to keep it simple. The first year is very, very difficult'
Christmas can be a tough time for those who have lost a loved one.
Irish Cystic Fibrosis activist Orla Tinsley recovering in hospital after double lung transplant
Tinsley spent the last number of days on life support in a New York hospital.
Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care
Orla Tinsley has been instrumental in raising awareness of gaps in CF services over the years.
'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal
HSE and Vertex employees were working long hours behind the scenes to secure the historic agreement.
Campaign to raise money for Orla Tinsley's lung transplant care hits target
A fundraiser has been set up to help Irish journalist Orla Tinsley raise money for a lung transplant aftercare.
'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi
A deal on the cystic fibrosis drug was finally reached last month.
'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis
Cystic fibrosis can be a life-changing condition for entire families.
'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi
Orkambi – as well as the drug Kalydeco – will now be available for CF sufferers from 1 May.
'Life changing' cystic fibrosis drug Orkambi will be available from next month
Simon Harris made the announcement today in the Dáil.
'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white'
Shauna Morrissey has cystic fibrosis and is campaigning for an opt-out organ donation system.
'Helen didn’t have a peaceful death, she wanted to live so much'
Helen Taylor died while waiting for a double lung transplant in 2014.