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#CF

# cf - Sunday 6 January, 2019

'I was studying to be a fitness coach when I needed a double lung transplant'
# Cystic Fibrosis
# Cystic Fibrosis

'I was studying to be a fitness coach when I needed a double lung transplant'

Jan 6th 2019, 5:28 PM 14,028 Views 2 Comments

Luke Doherty was added to the transplant waiting list when one of his lungs collapsed.

# cf - Saturday 14 April, 2018

'Nothing short of a miracle': Irish CF campaigner on recovery after double lung transplant
# Orla Tinsley
# Orla Tinsley

'Nothing short of a miracle': Irish CF campaigner on recovery after double lung transplant

Apr 14th 2018, 1:16 PM 18,126 Views 14 Comments

Orla Tinsley told RTÉ’s Six One News that she feels like a “new woman”.

# cf - Friday 13 April, 2018

'She was just so ill, it was horrible to see my child like that'
# 65 Roses Day
# 65 Roses Day

'She was just so ill, it was horrible to see my child like that'

Apr 13th 2018, 6:15 AM 17,275 Views 5 Comments

Darcy Grainger is one of about 1,300 people in Ireland who have cystic fibrosis.

# cf - Sunday 25 February, 2018

'I spend three hours a day on a nebuliser, but exercise helps my mental health'
# Cystic Fibrosis
# Cystic Fibrosis

'I spend three hours a day on a nebuliser, but exercise helps my mental health'

Feb 25th 2018, 7:30 PM 21,593 Views 16 Comments

Ireland has more cases of cystic fibrosis per head of population than any other country.

# cf - Wednesday 20 December, 2017

Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care
# Orla Tinsley
# Orla Tinsley

Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care

Dec 20th 2017, 4:05 PM 23,250 Views 21 Comments

Orla Tinsley has been instrumental in raising awareness of gaps in CF services over the years.

# cf - Saturday 26 August, 2017

'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal
# Cystic Fibrosis
# Cystic Fibrosis

'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal

Aug 26th 2017, 12:05 AM 12,436 Views 11 Comments

HSE and Vertex employees were working long hours behind the scenes to secure the historic agreement.

# cf - Monday 24 July, 2017

Campaign to raise money for Orla Tinsley's lung transplant care hits target
# Cystic Fibrosis
# Cystic Fibrosis

Campaign to raise money for Orla Tinsley's lung transplant care hits target

Jul 24th 2017, 4:16 PM 19,685 Views 13 Comments

A fundraiser has been set up to help Irish journalist Orla Tinsley raise money for a lung transplant aftercare.

# cf - Sunday 7 May, 2017

'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi
# Cystic Fibrosis
# Cystic Fibrosis

'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi

May 7th 2017, 6:45 AM 11,862 Views 5 Comments

A deal on the cystic fibrosis drug was finally reached last month.

# cf - Thursday 13 April, 2017

'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis
# 65 Roses Day
# 65 Roses Day

'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis

Apr 13th 2017, 6:07 AM 7,741 Views 5 Comments

Cystic fibrosis can be a life-changing condition for entire families.

# cf - Wednesday 12 April, 2017

'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi
# End Of A Long Road
# End Of A Long Road

'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi

Apr 12th 2017, 6:00 AM 6,585 Views 9 Comments

Orkambi – as well as the drug Kalydeco – will now be available for CF sufferers from 1 May.

# cf - Tuesday 11 April, 2017

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

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

Apr 11th 2017, 6:08 PM 29,702 Views 35 Comments

Simon Harris made the announcement today in the Dáil.

# cf - Monday 3 April, 2017

'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white'
# Organ Donation
# Organ Donation

'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white'

Apr 3rd 2017, 6:30 AM 19,914 Views 11 Comments

Shauna Morrissey has cystic fibrosis and is campaigning for an opt-out organ donation system.

# cf - Sunday 2 April, 2017

'Helen didn’t have a peaceful death, she wanted to live so much'
# Organ Donation
# Organ Donation

'Helen didn’t have a peaceful death, she wanted to live so much'

Apr 2nd 2017, 7:00 PM 36,619 Views 14 Comments

Helen Taylor died while waiting for a double lung transplant in 2014.

# cf - Wednesday 7 December, 2016

Vertex to re-open talks on Orkambi with HSE
# Cystic Fibrosis
# Cystic Fibrosis

Vertex to re-open talks on Orkambi with HSE

Dec 7th 2016, 6:30 PM 14,104 Views 61 Comments

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

# cf - Thursday 1 December, 2016

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

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

Dec 1st 2016, 9:50 PM 20,214 Views 37 Comments

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

# cf - Tuesday 29 November, 2016

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

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

Nov 29th 2016, 7:29 PM 11,043 Views 32 Comments

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

# cf - Monday 28 November, 2016

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

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

Nov 28th 2016, 8:30 PM 715 Views 77 Comments

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.

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

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

Nov 28th 2016, 10:14 AM 11,852 Views 48 Comments

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

# cf - Sunday 27 November, 2016

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

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

Nov 27th 2016, 3:35 PM 16,712 Views 52 Comments

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

# cf - Monday 31 October, 2016

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

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

Oct 31st 2016, 7:30 AM 18,148 Views 23 Comments

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

# cf - Wednesday 1 June, 2016

"A travesty" - Cystic fibrosis sufferers angry over lack of funding for potentially life-changing drug
# Not Cost-effective
# Not Cost-effective

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

Jun 1st 2016, 8:33 PM 12,480 Views 66 Comments

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

# cf - Monday 20 April, 2015

Another €1 million needed for cystic fibrosis patients in Limerick
# Staffing
# Staffing

Another €1 million needed for cystic fibrosis patients in Limerick

Apr 20th 2015, 11:00 AM 6,864 Views 9 Comments

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

# cf - Monday 22 December, 2014

Happy Christmas - Robbie Keane invites child with CF to Euro 2016 qualifier
# GOOD DEED
From The42
# GOOD DEED

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

Dec 22nd 2014, 9:05 AM 8,526 Views 14 Comments

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

# cf - Monday 1 December, 2014

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

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

Dec 1st 2014, 6:45 AM 55,989 Views 68 Comments

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

# cf - Sunday 23 November, 2014

‘Luke’s Christmas wish is that his mammy gets new lungs’
# Cystic Fibrosis
# Cystic Fibrosis

‘Luke’s Christmas wish is that his mammy gets new lungs’

Nov 23rd 2014, 8:30 PM 27,160 Views 28 Comments

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

# cf - Sunday 21 September, 2014

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

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

Sep 21st 2014, 8:15 AM 21,462 Views 25 Comments

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

# cf - Wednesday 11 June, 2014

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

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

Jun 11th 2014, 7:30 PM 433 Views 60 Comments

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.

# cf - Monday 24 March, 2014

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

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

Mar 24th 2014, 7:15 AM 11,537 Views 3 Comments

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.

# cf - Sunday 26 January, 2014

Updating your friends - while in a coma
# Social Network
# Social Network

Updating your friends - while in a coma

Jan 26th 2014, 8:45 AM 17,994 Views 12 Comments

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

# cf - Friday 1 February, 2013

Kalydeco to be made available to Cystic Fibrosis patients in Ireland
# Kalydeco
# Kalydeco

Kalydeco to be made available to Cystic Fibrosis patients in Ireland

Feb 1st 2013, 2:50 PM 9,359 Views 33 Comments

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

# cf - Monday 21 January, 2013

Negotiations underway over new CF drug deemed 'too expensive'
# Cystic Fibrosis
# Cystic Fibrosis

Negotiations underway over new CF drug deemed 'too expensive'

Jan 21st 2013, 10:33 AM 6,314 Views 23 Comments

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.

# cf - Tuesday 18 December, 2012

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

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

Dec 18th 2012, 8:51 AM 2,703 Views 4 Comments

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

# cf - Thursday 24 May, 2012

Why do females fare worse than males with cystic fibrosis?
# Cystic Fibrosis
# Cystic Fibrosis

Why do females fare worse than males with cystic fibrosis?

May 24th 2012, 1:39 PM 3,199 Views 4 Comments

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

# cf - Tuesday 8 November, 2011

New Cystic Fibrosis treatment launched
# Cystic Fibrosis
# Cystic Fibrosis

New Cystic Fibrosis treatment launched

Nov 8th 2011, 9:47 AM 2,114 Views 4 Comments

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.

# cf - Tuesday 4 October, 2011

Cystic Fibrosis ward to open at Crumlin hospital today
# Cystic Fibrosis
# Cystic Fibrosis

Cystic Fibrosis ward to open at Crumlin hospital today

Oct 4th 2011, 10:06 AM 866 Views 5 Comments

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.

# cf - Monday 24 January, 2011

Irish hospitals to introduce routine CF tests for newborns
# CF
# CF

Irish hospitals to introduce routine CF tests for newborns

Jan 24th 2011, 8:54 AM 869 Views 0 Comments

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

The 9 at 9: Monday
# 9 At 9
# 9 At 9

The 9 at 9: Monday

Jan 24th 2011, 8:30 AM 1,677 Views 0 Comments

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.

# cf - Thursday 14 October, 2010

CF unit contract to be signed this week
# Cystic Fibrosis
# Cystic Fibrosis

CF unit contract to be signed this week

Oct 14th 2010, 8:45 AM 307 Views 0 Comments

St Vincent’s Hopsital says it will finalise the agreement to build its special unit in the next 24 hours.

# cf - Wednesday 13 October, 2010

New CF unit could be built by April 2012
# Cystic Fibrosis
# Cystic Fibrosis

New CF unit could be built by April 2012

Oct 13th 2010, 7:06 PM 215 Views 0 Comments

Cystic Fibrosis sufferers could see a specialised unit open in 18 months.

# cf - Sunday 10 October, 2010

The 9 at 9: Sunday
# 9 At 9
# 9 At 9

The 9 at 9: Sunday

Oct 10th 2010, 8:52 AM 415 Views 0 Comments

9 things you absolutely need to know by 9am.