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#Cystic Fibrosis

From TheJournal.ie PPE grant now available for people with cystic fibrosis SUPPORTS

PPE grant now available for people with cystic fibrosis

The grant of €100 per applicant is available from Cystic Fibrosis Ireland.

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

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.

From TheJournal.ie Five weeks in lockdown in hospital is tough - and the food makes it worse Cystic Fibrosis

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.

From TheJournal.ie Over €300,000 raised for CF Ireland through 65 Roses fundraising efforts Donations

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.

From TheJournal.ie Living with cystic fibrosis in a pandemic is tough, but we have lived this for some time 65 Roses Day

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.

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

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.

From TheJournal.ie Opinion: As a Cystic Fibrosis patient, the coronavirus is a major worry for me Covid-19

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

Benat Broderick writes about his concerns regarding Covid-19.

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

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.

From TheJournal.ie 'A most wonderful Christmas present': HSE to reimburse cost of new cystic fibrosis treatment Breakthrough

'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.

From TheJournal.ie New approach to treating cystic fibrosis could reduce the need for lung transplants, RCSI study finds Cystic Fibrosis

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.

From TheJournal.ie Irish couple facing deportation in Australia because son has cystic fibrosis granted residency Down Under

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.

From TheJournal.ie Irish couple facing deportation from Australia because son has cystic fibrosis lose appeal Victoria

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.

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

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.

From TheJournal.ie 'Thinking of my donor made me really determined to achieve': How a double lung transplant changed this DCU lecturer's life Second Chance This post contains videos

'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.

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

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).

From TheJournal.ie 'I was studying to be a fitness coach when I needed a double lung transplant' 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.

From TheJournal.ie 'If I didn't take part in a clinical trial, I would have died' Better Care

'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.

From TheJournal.ie Over 2,000 people sign up for organ donor cards in light of Orla Tinsley documentary Warrior

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.

From TheJournal.ie 'Nothing short of a miracle': Irish CF campaigner on recovery after double lung transplant 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”.

From TheJournal.ie 'She was just so ill, it was horrible to see my child like that' 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.

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

From TheJournal.ie 'We're terrified': Parents of sick children to hold vigil outside Crumlin hospital over trolley crisis Waiting Lists

'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.

From TheJournal.ie 'We've come so far': Orkambi campaigners hail next step as children can now get 'life-changing' drug Cystic Fibrosis

'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.

From TheJournal.ie 'I have shiny new lungs' -Irish Cystic Fibrosis activist gets double lung transplant Orla Tinsley

'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.

From TheJournal.ie Christmas without loved ones: 'Try to keep it simple. The first year is very, very difficult' Anam Cara

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.

From TheJournal.ie Irish Cystic Fibrosis activist Orla Tinsley recovering in hospital after double lung transplant Donor Card

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.

From TheJournal.ie Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care 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.

From TheJournal.ie 'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal Cystic Fibrosis This post contains videos

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

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

From TheJournal.ie Campaign to raise money for Orla Tinsley's lung transplant care hits target 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.

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

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

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

From TheJournal.ie 'Life changing' cystic fibrosis drug Orkambi will be available from next month Deal Reached

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

Simon Harris made the announcement today in the Dáil.

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

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

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

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

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

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

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

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

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

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

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

From TheJournal.ie Cystic Fibrosis patients being 'used as pawns' in Orkambi medication negotiations Too Expensive

Cystic Fibrosis patients being 'used as pawns' in Orkambi medication negotiations

The drugs are currently too expensive for the HSE to make available to patients.

From TheJournal.ie Vertex to re-open talks on Orkambi with HSE 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.

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