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#Cystic Fibrosis

Opinion: 'A new cystic fibrosis drug means I'm the healthiest I've been for 20 years'
# 65 Roses Day
From TheJournal.ie
# 65 Roses Day

Opinion: 'A new cystic fibrosis drug means I'm the healthiest I've been for 20 years'

Apr 8th 2021, 7:00 AM 29,977 Views 11 Comments

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
# Still Waiting
From TheJournal.ie
# Still Waiting

Department of Health can't give timeline for rollout of publicly-funded IVF

Jan 4th 2021, 12:05 AM 30,360 Views 27 Comments

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
# SUPPORTS
From TheJournal.ie
# SUPPORTS

PPE grant now available for people with cystic fibrosis

Aug 4th 2020, 2:01 PM 15,777 Views 9 Comments

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
# Covid-19
From TheJournal.ie
# Covid-19

Cocooning through Covid-19 with CF has taken focus but I have never felt better

Jun 16th 2020, 7:00 AM 12,071 Views 4 Comments

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
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

Five weeks in lockdown in hospital is tough - and the food makes it worse

May 30th 2020, 6:00 PM 54,751 Views 55 Comments

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
# Donations
From TheJournal.ie
# Donations

Over €300,000 raised for CF Ireland through 65 Roses fundraising efforts

Apr 21st 2020, 9:28 PM 10,636 Views 1 Comment

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
# 65 Roses Day
From TheJournal.ie
# 65 Roses Day

Living with cystic fibrosis in a pandemic is tough, but we have lived this for some time

Apr 10th 2020, 10:00 PM 16,502 Views 1 Comment

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
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

Opinion: 'Covid-19 is the world's biggest fear. Welcome to my world.' Diary of a man with Cystic Fibrosis

Apr 3rd 2020, 7:00 AM 29,265 Views 5 Comments

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
# Covid-19
From TheJournal.ie
# Covid-19

Opinion: As a Cystic Fibrosis patient, the coronavirus is a major worry for me

Mar 14th 2020, 6:00 AM 32,723 Views 33 Comments

Benat Broderick writes about his concerns regarding Covid-19.

Record number of patients were hit by dangerous hospital superbug last year
# Record Breaking
From TheJournal.ie
# Record Breaking

Record number of patients were hit by dangerous hospital superbug last year

Jan 17th 2020, 6:00 AM 10,209 Views 3 Comments

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
# Breakthrough
From TheJournal.ie
# Breakthrough

'A most wonderful Christmas present': HSE to reimburse cost of new cystic fibrosis treatment

Dec 13th 2019, 9:12 PM 11,122 Views 12 Comments

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
From TheJournal.ie
# Cystic Fibrosis

New approach to treating cystic fibrosis could reduce the need for lung transplants, RCSI study finds

Dec 3rd 2019, 6:10 AM 9,256 Views 5 Comments

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
# Down Under
From TheJournal.ie
# Down Under

Irish couple facing deportation in Australia because son has cystic fibrosis granted residency

Jul 6th 2019, 10:19 AM 33,655 Views 42 Comments

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
# Victoria
From TheJournal.ie
# Victoria

Irish couple facing deportation from Australia because son has cystic fibrosis lose appeal

May 7th 2019, 3:35 PM 57,418 Views 0 Comments

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
# Opinion
From TheJournal.ie
# Opinion

We need to change the disabled parking logo - so people stop telling me that I'm not disabled when I am

Apr 29th 2019, 7:00 AM 53,207 Views 129 Comments

‘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
# Second Chance
From TheJournal.ie
# Second Chance

'Thinking of my donor made me really determined to achieve': How a double lung transplant changed this DCU lecturer's life

Mar 31st 2019, 8:00 PM 10,766 Views 2 Comments

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
# Opinion
From TheJournal.ie
# Opinion

Opinion: At 12 I started taking Orkambi as a trial drug and it transformed my life

Jan 28th 2019, 7:00 AM 22,200 Views 7 Comments

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'
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

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

Jan 6th 2019, 5:28 PM 14,044 Views 2 Comments

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'
# Better Care
From TheJournal.ie
# Better Care

'If I didn't take part in a clinical trial, I would have died'

Dec 3rd 2018, 6:30 AM 19,578 Views 13 Comments

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
# Warrior
From TheJournal.ie
# Warrior

Over 2,000 people sign up for organ donor cards in light of Orla Tinsley documentary

Updated Sep 18th 2018, 10:10 PM 48,471 Views 34 Comments

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
From TheJournal.ie
# Orla Tinsley

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

Apr 14th 2018, 1:16 PM 18,127 Views 14 Comments

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'
# 65 Roses Day
From TheJournal.ie
# 65 Roses Day

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

Apr 13th 2018, 6:15 AM 17,296 Views 4 Comments

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'
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

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

Feb 25th 2018, 7:30 PM 21,606 Views 16 Comments

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
# Waiting Lists
From TheJournal.ie
# Waiting Lists

'We're terrified': Parents of sick children to hold vigil outside Crumlin hospital over trolley crisis

Feb 11th 2018, 12:00 PM 14,221 Views 24 Comments

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
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

'We've come so far': Orkambi campaigners hail next step as children can now get 'life-changing' drug

Jan 11th 2018, 6:10 AM 7,858 Views 9 Comments

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
# Orla Tinsley
From TheJournal.ie
# Orla Tinsley

'I have shiny new lungs' -Irish Cystic Fibrosis activist gets double lung transplant

Dec 26th 2017, 5:02 PM 23,020 Views 24 Comments

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'
# Anam Cara
From TheJournal.ie
# Anam Cara

Christmas without loved ones: 'Try to keep it simple. The first year is very, very difficult'

Dec 23rd 2017, 9:45 AM 36,421 Views 19 Comments

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
# Donor Card
From TheJournal.ie
# Donor Card

Irish Cystic Fibrosis activist Orla Tinsley recovering in hospital after double lung transplant

Dec 21st 2017, 4:25 PM 24,242 Views 23 Comments

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
From TheJournal.ie
# 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.

'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal
# Cystic Fibrosis
From TheJournal.ie
# 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 12,493 Views 11 Comments

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
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

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

Jul 24th 2017, 4:16 PM 19,693 Views 13 Comments

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
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

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

May 7th 2017, 6:45 AM 11,879 Views 5 Comments

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
# 65 Roses Day
From TheJournal.ie
# 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 7,767 Views 5 Comments

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
# End Of A Long Road
From TheJournal.ie
# 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 6,591 Views 9 Comments

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
# Deal Reached
From TheJournal.ie
# Deal Reached

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

Apr 11th 2017, 6:08 PM 29,719 Views 35 Comments

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'
# Organ Donation
From TheJournal.ie
# 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 19,924 Views 10 Comments

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'
# Organ Donation
From TheJournal.ie
# Organ Donation

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

Apr 2nd 2017, 7:00 PM 36,640 Views 14 Comments

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

Deal on 'miracle' cystic fibrosis drug expected in a matter of weeks
# Orkambi
From TheJournal.ie
# Orkambi

Deal on 'miracle' cystic fibrosis drug expected in a matter of weeks

Mar 6th 2017, 1:24 PM 9,827 Views 15 Comments

Health Minister Simon Harris said that he wants a good deal for the taxpayer and, most importantly, for patients.

Taoiseach told 'several children have died' waiting for Orkambi drug decision
# Cystic Fibrosis
From TheJournal.ie
# Cystic Fibrosis

Taoiseach told 'several children have died' waiting for Orkambi drug decision

Feb 21st 2017, 8:06 PM 18,033 Views 53 Comments

Orkambi is estimated to cost €159,000 per patient.

Your crash course in... Ireland's battle with Big Pharma for a 'miracle' cystic fibrosis drug
# Health
From TheJournal.ie
# Health

Your crash course in... Ireland's battle with Big Pharma for a 'miracle' cystic fibrosis drug

Dec 18th 2016, 7:00 AM 8,346 Views 33 Comments

The government is making a last-ditch attempt to settle a better price for Orkambi.

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