Let’s Talk – Understanding Lung Inflammation for IPF
The next “Let’s Talk” event from the Irish Lung Fibrosis Association will take place on Monday 19th May at 2pm.
“Let’s Talk – Understanding the Role of Lung Inflammation During IPF’” will be delivered by Professor Adam Byrne, Professor of Respiratory Immunology at University College Dublin School of Medicine and will be followed by a Questions and Answers Session.
Please email info@ilfa.ie to register and to submit any questions you may have in advance.
ILFA has advocated on behalf of lung fibrosis patients and the greater lung fibrosis community for more than 20 years. On 11th June we will once again return to Leinster House, this time to brief members of Dáil Éireann using a report ILFA commissioned on the inequitable state of healthcare for lung fibrosis patients in Ireland with recommendations for improvement. This groundbreaking report was delivered by Prospectus Management Consultants, a leading research company in Ireland.
As part of the report launch, we will be demanding the Government and the HSE live up to the promises they have made. Specifically:
- Release the 500,000 euros in funding allocated in Budget 2025 for lung fibrosis. That money should go toward a disease registry, pulmonary rehabilitation, grants for patients to offset the high cost of electricity and travel, and to hire a nurse to increase ILFA’s medical expertise.
- Staff the Clinical Pathway Advisor role (originally promised more than two years ago) so that work can begin on building a foundation for a Clinical Programme.
- Investigate the delays and service issues related to the oxygen contract changeover (originally due to be completed in November 2024 but still ongoing) and look into the dramatic decline in lung transplants in 2024 and 2025.
Please save the date and support our work. On launch day (11th June) there will be media attention. We ask that you share the news stories across your network of family and friends. In addition, we will publish the report on our website along with a “Contact Your TD” toolkit. Follow the instructions in the toolkit and write, call or visit your TD to demand that lung fibrosis patients receive the care they need.
If you missed our Patient Information Day webinar on 30th April, you can watch it back on our YouTube Channel at the following link: https://youtu.be/wNLj1xUuuK8?si=3qK_eonCsdYl9XDr
Be sure to Like the video and Subscribe to our YouTube channel for all the latest videos!
There is a new study by the UCD School of Psychology on the mental health and well-being of people living with Idiopathic Pulmonary Fibrosis (IPF). The study is headed by Dr. Sonya Deschênes, Assistant Professor, Dr. Elizabeth O’Brien, Clinical Psychologist, and Alisa Oriol, MSc., UCD School of Psychology. Patients over the age of 18 with English fluency who have been diagnosed with IPF for longer than six months are invited to participate.
Currently, there is little research in Ireland on the psychological wellbeing of people with idiopathic pulmonary fibrosis (IPF). The study aims to explore the current state of mental health and wellbeing in people with IPF. It also wants to know how people with IPF in Ireland are supported by others, and what kind of social supports they need.
For more information and to join the study: https://tinyurl.com/4cmkfdc8
If you’re unable to view the video above, click here to watch back on YouTube.
Our next Patient Information Day will be 30th of April from 11 am to 1:15 pm online.
Our speakers will include:
- Professor Cormac McCarthy, Respiratory Consultant, St Vincent’s Hospital
- Nazia Chaudhuri, MD, PhD, Clinical Senior Lecturer, Ulster University
- Helena Dilleen, Gilly Studios and Mindfulness Teacher
- Zita Lawler, Cardio Thoracic Transplant Co Ordinator, Heart & Transplant Unit, Mater Misericordiae University Hospital
- Carol Doherty, CANP Letterkenny
- And as always, we close with a patient story.
Join us for this informative session by clicking on the registration link: https://us02web.zoom.us/webinar/register/WN_GElylspmQn68C0gpAL6OQQ
ILFA are delighted to announce a new online six week course we’ll be offering over the coming months to support your resilience. Lung fibrosis patients and those who support them are welcome to register their interest in an exciting new exploration of the building blocks of resilience through creative and mindful interventions. Each 90 minute session will feature a guest lecturer followed by facilitated group activities meant to enhance and embed the learning.
Topics include:
- Minding your mental health
- Supporting your breath
- Enhancing your creativity
- Practicing self-care
- Wisdom as we age
- Exercising compassion for ourselves and others
Funding for this course is generously provided by the Hospital Saturday Fund. If you are interested in attending, register your interest by emailing info@ilfa.ie or calling us at 086 871 5264.
The West Kerry Tractor run has once again provided necessary funding to support a small charity with big ambitions.
The Irish Lung Fibrosis Association (ILFA) is a national patient representative organisation, originally founded in 2002. For more than 20 years, ILFA has provided education and direct supports for patients and the lung fibrosis community. ILFA also advocates on behalf of patients for more equitable access to healthcare services and promotes research into the causes and treatments of lung fibrosis.
Lung fibrosis (or pulmonary fibrosis) is a progressive, life-limiting disease characterised by the thickening and scarring of lung tissue, leading to decreased lung function over time. The disease usually develops in adults over 60 and causes breathlessness, fatigue, and chronic cough that severely affects the patient’s quality of life. As of today, there is no cure.
In recent years it’s believed that lung fibrosis prevalence is rising in Ireland. Data from the Irish Thoracic Society indicates that up to 5,000 people in Ireland may have lung fibrosis but the real figure could be higher. It’s impossible to know the exact number as there is no disease registry in Ireland like there would be in many other countries.
Lung fibrosis patients in Ireland face a battle on two fronts, against the progression of their disease and against an inequitable healthcare system that favours patients living in major cities with the financial resources to fund the high cost of ongoing disease management. Patient care within the public system is concentrated into eight specialist centres, most of which are in Dublin, forcing patients in rural areas to often travel great distances. Many have neither the physical strength nor the financial resources to do so.
ILFA aims to level the playing field in this inequitable system through its advocacy for a Clinical Programme which would ensure every patient in Ireland, regardless of location or financial resources would receive the care they need in their community. A Clinical Programme is our ultimate goal, but we’re not waiting for that to arrive. While we advocate for it, ILFA also advocates for immediate priorities like patient access to pulmonary rehabilitation, the establishment of a disease registry, and tax rebates to offset the high cost of care. Our advocacy work was recognised by the then Minister for Health, Stephen Donnelly with a 500,000 euro allocation in Budget 2025. But as of today, with the HSE in the midst of a chaotic transition to regional structures, that funding, earmarked for lung fibrosis, hangs in limbo.
Which means it is even more important for organisations like ILFA to exist. ILFA is a small charity funded almost entirely by donations; we receive less than 4 percent of our annual funding from the State. We depend on the generous donations of individuals and communities, just like those that showed up on that stormy day in November to raise critical funds for us.
We are deeply grateful to the organisers of the West Kerry Tractor Run, the drivers and supporters like the Marina Inn for their steadfast support. For the last six years, proceeds from this event have funded critical ILFA programmes like patient information and exercise packs, our patient support line, exercise classes, informational webinars, bursaries for medical professionals, and our advocacy work. We are truly honoured to be chosen as a beneficiary again this year and remain deeply grateful for the enormous generosity of the West Kerry community.
The European Lung Foundation (ELF) recently held an excellent webinar exploring the link between mental health and lung conditions. You can watch this informative webinar here: https://youtu.be/r8W33ZtzVaA
