There is a particular kind of breathlessness that people explain away for years. The hill on the way back from the shop takes two stops instead of none. You stop halfway up the stairs and pretend you were looking for something. A dry, tickly cough settles in and never quite leaves. Most of us file that under getting older, being unfit, or a chest that never recovered after a bad winter.
Sometimes it is exactly that. Sometimes it is lung fibrosis, and the years spent explaining it away are the years that mattered most.
TL;DR
- More than 5,000 people in Ireland live with lung fibrosis. Idiopathic pulmonary fibrosis (IPF), the most common form, affects roughly 1,000 people here, with about 400 new cases a year.
- The pattern is breathlessness on exertion plus a persistent dry cough, often misread as asthma, COPD or simply age. Irish patients can wait up to a year for a diagnosis.
- The Irish Thoracic Society standard is diagnosis and treatment within 16 weeks at a specialist interstitial lung disease centre, while admitting the resources to deliver it reliably are not there.
- Antifibrotics slow the decline, they do not reverse scarring. A third drug, nerandomilast, was approved across the EU in July 2026, but Irish reimbursement is a separate decision still to be made.
- Almost half of Irish lung fibrosis patients surveyed had never been referred to physiotherapy, dietetics, social work, occupational therapy, psychology or palliative care. Most of what helps has to be asked for.
What lung fibrosis actually is
Fibrosis means scarring. In the lungs, that scarring stiffens the delicate tissue where oxygen crosses into the blood, which is why the first sign is usually breathlessness during activity rather than at rest.
It sits inside a family of more than 200 interstitial lung diseases. The most common is idiopathic pulmonary fibrosis, where no cause can be identified. IPF is rare under 50, more common in men, and its outlook is sobering: median survival is counted in a handful of years from diagnosis, worse than several common cancers. That is why early diagnosis is not an academic point.
The symptoms that get filed under age
Four things turn up again and again: breathlessness on exertion that is slowly worsening, a dry cough that produces nothing, fatigue that sleep does not fix, and reflux. A fifth, clubbing of the fingertips, is easy to miss in yourself and obvious to a doctor looking for it.
The most useful clinical sign costs nothing. A stethoscope on the lower back during a deep breath in picks up fine crackles that respiratory doctors describe as sounding like Velcro being pulled apart. That is reason enough to ask your GP directly to listen to your lungs.
Delay is the norm. Professor Killian Hurley of the Irish Thoracic Society has noted that patients here can wait up to a year for a diagnosis, often after being treated for asthma, COPD or recurrent chest infections. If two or three courses of antibiotics or an inhaler have not helped, that is information worth saying out loud at the next appointment.
What a proper Irish diagnosis looks like
A chest X-ray is not enough. The test that matters is a high resolution CT scan of the chest, alongside pulmonary function tests, a six minute walk test with oxygen monitoring, and blood tests for autoimmune causes. The diagnosis should then be made by a multidisciplinary team rather than one clinician in isolation.
Ireland has regional specialist centres at Beaumont, the Mater, St Vincent’s, St James’s and Tallaght in Dublin, plus Cork, Galway and Limerick. Beaumont also runs a Centre for Familial Pulmonary Fibrosis, which matters more here than elsewhere: Irish registry data found roughly one in five IPF patients had a relative with fibrotic lung disease, against 6.2 per cent in the equivalent UK registry. If it has appeared more than once in your family, say so.
The Irish Thoracic Society sets the standard at review, confirmed diagnosis and treatment started within 16 weeks of referral, while acknowledging that current resources cannot reliably meet it. Knowing the standard exists is what lets you ask why you are outside it.
Not all fibrosis is idiopathic, and that distinction can be worth money
Idiopathic means no identifiable cause, and it is a label of exclusion. Before it is applied, a good team looks hard at drugs (some chemotherapy agents and antibiotics), previous radiotherapy to the chest, autoimmune conditions such as rheumatoid arthritis or scleroderma, and occupational exposure to asbestos, silica dust, mouldy hay or bird proteins.
That last category is one many Irish men in their sixties and seventies have lived through without ever being asked about it. Lagging, shipyards, construction, boiler rooms and older school buildings all carried asbestos. Asbestosis is a prescribed occupational disease under Ireland’s Occupational Injuries Scheme, so Disablement Benefit may be payable where disablement is assessed at 15 per cent or more: a weekly pension at 20 per cent and above, a lump sum below that. Nobody will raise this for you. Bring your full work history, including jobs you left forty years ago.
Treatment in 2026: slowing, not reversing
Two antifibrotic medicines have been available in Ireland for years, pirfenidone and nintedanib. Both slow the rate at which lung function declines, neither has established superiority over the other, and neither reverses existing scarring. Both have real side effects, which is why they need proper follow up with a specialist nurse rather than a repeat prescription and a shrug.
There is genuine news this year. Nerandomilast, a different class of drug entirely, was approved by the European Commission on 17 July 2026 for both IPF and progressive pulmonary fibrosis, following approvals in the United States and the UK. That is a European licence, not Irish availability: pricing and reimbursement are national decisions, so the HSE process still has to run. The useful question for your consultant is whether a reimbursement application has been made, and whether any trial access exists in the meantime.
The supports nobody offers you automatically
This is the part the research is bluntest about. An ILFA survey of 112 Irish patients, published in the Irish Medical Journal in October 2022, found 45 per cent had never been referred to any of physiotherapy, dietetics, social work, occupational therapy, clinical psychology, palliative care or speech therapy. Only 38 per cent had ever seen a physiotherapist. Just 58 per cent had a clinical nurse specialist, ranging from 37 per cent in Leinster outside Dublin to 80 per cent in Connacht, with none at all in several counties. Where referrals happened, most came more than a year after diagnosis.
Pulmonary rehabilitation is the standout: 95 per cent of those who reached physiotherapy rated it good or excellent. Most Irish programmes were built around COPD, so ask specifically whether yours accepts fibrosis patients.
Home oxygen is prescribed only after specialist assessment, is free with a medical card, and is reclaimable under the Drugs Payment Scheme without one. Two companies supply it here, Air Liquide Healthcare (1800 240 202) and Vivisol (1800 350 300). Two things people are rarely told: register with your electricity supplier’s priority support list, because a concentrator runs on mains power and adds to your bill, and keep the equipment at least three metres from any open flame.
On cost, IPF is not on the Long-Term Illness Scheme, whose list of sixteen conditions has not changed since the 1970s. The Drugs Payment Scheme cap of €80 a month is therefore the relevant ceiling for most households, unless a medical card or GP visit card applies on income grounds.
What to ask for
ILFA’s National Patient Charter, endorsed by the Irish Thoracic Society, sets out six things a patient should expect: early and accurate diagnosis, clear information, access to medication and oxygen, access to pulmonary rehabilitation, early referral to the national lung transplant unit with minimal emphasis on age, and access to psychological and palliative care.
That transplant line deserves emphasis, because people rule themselves out. More than 30 per cent of lung transplants performed in Ireland are for IPF. The referral triggers to the national centre at the Mater are a diffusion capacity below 40 per cent predicted or a 10 per cent fall in forced vital capacity, and transplant can be considered above 70 in carefully selected cases. Ask whether a referral has been discussed rather than waiting to be offered one.
The Irish Lung Fibrosis Association runs a nurse adviceline on 1800 99 88 11, weekly online exercise classes, a virtual pulmonary rehabilitation pilot, support groups and a counselling grant for patients and family members. Where the formal system is this patchy by county, that is often the first competent voice a newly diagnosed person speaks to.
The honest version
Lung fibrosis is serious and it is not curable. It is also far more manageable than it was a decade ago, and the difference between a good outcome and a poor one here is frequently not the medicine. It is how quickly someone was scanned, whether they reached a specialist centre, and whether anyone referred them to rehab before their world had shrunk to one room.
If you have been quietly shrinking your life to fit your breathing, that is the symptom worth reporting. At Críonna Health we keep returning to the same point: a symptom you have adapted to is still a symptom, and the adaptation is the part to mention.
This article is for general information and is not a substitute for individual medical advice. If you are worried about your breathing, speak to your GP.
📷 Photo by Maciej Zielonka on Unsplash
