# CF

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.

30.7k

Apr 8th 2021, 7:00 AM

# Cystic Fibrosis

'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.

14.2k

Jan 6th 2019, 5:28 PM

# orla tinsley

'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”.

18.2k

Apr 14th 2018, 1:16 PM

# 65 roses day

'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.

17.3k

Apr 13th 2018, 6:15 AM

# 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.

21.7k

Feb 25th 2018, 7:30 PM

# orla tinsley

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.

23.3k

Dec 20th 2017, 4:05 PM

# Cystic Fibrosis

'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.

12.6k

Aug 26th 2017, 12:05 AM

# Cystic Fibrosis

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.

19.7k

Jul 24th 2017, 4:16 PM

# Cystic Fibrosis

'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.

12.0k

May 7th 2017, 6:45 AM

# 65 roses day

'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.

7.9k

Apr 13th 2017, 6:07 AM

# end of a long road

'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.

6.7k

Apr 12th 2017, 6:00 AM

# deal reached

'Life changing' cystic fibrosis drug Orkambi will be available from next month

Simon Harris made the announcement today in the Dáil.

29.8k

Apr 11th 2017, 6:08 PM

# Organ Donation

'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.

20.0k

Apr 3rd 2017, 6:30 AM

# Organ Donation

'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.

36.7k

Apr 2nd 2017, 7:00 PM

# Cystic Fibrosis

Vertex to re-open talks on Orkambi with HSE

Earlier, hundreds of people attended a protest outside Leinster House calling for action on the drug.

14.2k

Dec 7th 2016, 6:30 PM

# Cystic Fibrosis

Drug company wants Simon Harris to intervene in row on life-changing drug Orkambi

The health minister said he wants “further engagement” between Vertex and the HSE.

20.3k

Dec 1st 2016, 9:50 PM

# Orkambi

Simon Harris writes to other health ministers in bid to reduce cost of CF drug

The Health minister wants to team up with England, Scotland, Canada and Australia.

11.2k

Nov 29th 2016, 7:29 PM

Voices

Opinion: 'My little boy isn't worth the cost of Orkambi'

News broke last night on Twitter that the Government have rejected a drug – Orkambi – that could stop my son’s pain, suffering and lengthen his life, writes Elmarie Tipper.

825

Nov 28th 2016, 8:30 PM

# Orkambi

HSE drug advisor says life-changing cystic fibrosis drug is "not value for money"

It was reported yesterday that the HSE would not be financing the drug.

12.0k

Nov 28th 2016, 10:14 AM

# Orkambi

Cystic fibrosis patients 'dismayed' at decision to not fund life-changing drug

Simon Harris has said he has not yet received a decision from the HSE regarding Orkambi.

16.8k

Nov 27th 2016, 3:35 PM

# Cystic Fibrosis

'Orkambi saved my life, other people should get access to it'

The drug, which costs about €160,000 per patient per year, is giving some people with cystic fibrosis a new lease of life.

18.2k

Oct 31st 2016, 7:30 AM

# not cost-effective

"A travesty" - Cystic fibrosis sufferers angry over lack of funding for potentially life-changing drug

Meanwhile, the cancer drug Pembrolizumab has been approved for reimbursement by the HSE.

12.5k

Jun 1st 2016, 8:33 PM

# staffing

Another €1 million needed for cystic fibrosis patients in Limerick

The state-of-the-art new cystic fibrosis unit in University Hospital Limerick was built thanks to charitable fundraising efforts.

6.9k

Apr 20th 2015, 11:00 AM

# GOOD DEED

Happy Christmas - Robbie Keane invites child with CF to Euro 2016 qualifier

Nine-year old Cody Nolan will be a guest in the striker’s private box at the Aviva.

8.5k

Dec 22nd 2014, 9:05 AM

# Rest In Peace

'Helen didn't get lungs ... but we’ll make sure other people get them because of her'

“She wanted to live with every fibre of her being.”

56.1k

Dec 1st 2014, 6:45 AM

# Cystic Fibrosis

'Luke's Christmas wish is that his mammy gets new lungs'

Helen Taylor, a Cystic Fibrosis sufferer, has been on the organ transplant waiting list for almost a year.

27.3k

Nov 23rd 2014, 8:30 PM

# Awareness

'You could have lung disease, but won't notice if your only exercise is shopping'

Most people are unable to spot the warning signs of the disease.

21.5k

Sep 21st 2014, 8:15 AM

Voices

Opinion: It's still hard to express the sadness that comes with being unable to have children

In the past, people with cystic fibrosis typically died in childhood. But now that we have longer lifespans we are often faced with a new problem: infertility.

512

Jun 11th 2014, 7:30 PM

# 65 Roses

"Every day is like running a marathon": Living with Cystic Fibrosis in Ireland

TheJournal.ie speaks to mum of two-year-old Mason and 20-year-old student Amy about their day-to-day experiences with the chronic illness.

11.6k

Mar 24th 2014, 7:15 AM

# Social Network

Updating your friends - while in a coma

For one Kerry-born woman, it was just a case of having the right friend.

18.0k

Jan 26th 2014, 8:45 AM

# Kalydeco

Kalydeco to be made available to Cystic Fibrosis patients in Ireland

The decision was announced today by Minister James Reilly after an agreement was reached with the HSE and the manufacturers of the drug.

9.4k

Feb 1st 2013, 2:50 PM

# Cystic Fibrosis

Negotiations underway over new CF drug deemed 'too expensive'

Irish health authorities will negotiate the price of a “groundbreaking” new treatment for cystic fibrosis, which would currently cost the State more than €28 million annually.

6.4k

Jan 21st 2013, 10:33 AM

# Cystic Fibrosis

St Vincent’s to provide two extra rooms for Cystic Fibrosis patients

Two in-patient rooms will be held in reserve for emergency CF admissions – but patients say the arrangement falls short.

2.7k

Dec 18th 2012, 8:51 AM

# Cystic Fibrosis

Why do females fare worse than males with cystic fibrosis?

A new study from the Royal College of Surgeons in Ireland shows that the female hormone oestrogen has a role to play in this.

3.3k

May 24th 2012, 1:39 PM

# Cystic Fibrosis

New Cystic Fibrosis treatment launched

The ‘Podhaler’ is a wireless inhaler that reduces the time needed to receive antibiotic treatment from almost an hour a day to just five or six minutes.

2.2k

Nov 8th 2011, 9:47 AM

# Cystic Fibrosis

Cystic Fibrosis ward to open at Crumlin hospital today

President Mary McAleese will be at Our Lady’s Children’s Hospital today to open a state-of-the-art, four-bed ward for patients with Cystic Fibrosis.

945

Oct 4th 2011, 10:06 AM

# CF

Irish hospitals to introduce routine CF tests for newborns

The HSE has announced that it plans to introduce a newborn screening programme for cystic fibrosis.

898

Jan 24th 2011, 8:54 AM

Good Morning

The 9 at 9 Nine things you need to know by 9am: Deadlines loom for would-be Fianna Fail leaders, for a final date for General Election 2011 – and for the person who wants to be the one to flick the ‘crush’ switch on Sean FitzPatrick’s BMW.

1.7k

Jan 24th 2011, 8:30 AM