Study Participants Wanted – IPF and Mental Health

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:

1. Minding your mental health
2. Supporting your breath
3. Enhancing your creativity
4. Practicing self-care
5. Wisdom as we age
6. 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

Please note that as of the 25th of February, ILFA’s new correspondence address is:

ILFA

Carmichael Centre

4 North Brunswick Street

Dublin 7 D07 RHA8

Our registered address at Lavery House remains unchanged.

We are delighted to be once again this year offering two Patient Information Days and six Let’s Talk sessions on a variety of topics relevant to patients and the wider lung fibrosis community. A calendar of events will soon be posted with more details, but in the meantime, save the date for our next upcoming events!

Let’s Talk Oxygen with Air Liquide and Vivisol (online): 27th March at 3:00 pm.

Patient Information Day (online): 30th April at 11:00 am.

To register your interest for these events, email info@ilfa.ie

First Things First 

Born in 1958 in Berlin Germany, my life had many turns and unusual new starts. My first, and still most loved, job is as a social worker – and not just any social worker, but one working with “juvenile serial offenders”. Don’t ask me what drew me to that work and why they, kind of, accepted me. I guess it was my way of being blunt and straight forward.  

After 20 years I left this work, studied computer sciences and moved to Ireland in 2007 to work as a Software Engineer. I had 7 challenging and interesting years, but the social worker in me was still alive, and I started working with charity organisations in Ecuador, Australia, Kenya and South Africa.  

The IPF Diagnosis 

My medical story starts as – I guess – many stories start. Despite being middle-aged, a bit overfed, and not exactly athletic, you feel quite indestructible. Okay, your doctor might have told you to take better care of yourself, and perhaps given you pills to manage your blood pressure or cholesterol but that’s what doctors do. You live your life thinking that this is the aging process. What could go wrong?  

It’s hard to say when my IPF started because it developed so gradually. Since 2022, my breathlessness has become annoying, and I started thinking that it might not just be caused by being overweight and unfit, but I didn’t call it “illness” at that time.  

In early 2023, I had a chest infection and went to the hospital for the first time, but with antibiotics and steroids, I was back on my feet in no time.  

It took over 6 months to get an appointment for breath tests. It took another 6 months for an appointment with a lung specialist to find out the results of the test. The first diagnosis was COPD. I wasn’t scared by that. Of course, COPD is something serious, but it can let you live for many, many years.  

In April 2024, I went to South Africa for the last time, and things turned really bad. I guess the long flights and climate change did their part, and my lungs reacted to it quite heavily. At the end of my five-week stay, I couldn’t make it upstairs or walk more than a couple of minutes without severe breathlessness.  

Being back home, I went to my GP, and he sent me to hospital immediately and I spent 2 days in the ER. After several tests, they told me that my fibrosis was progressing due to another chest infection. The strange part was that I didn’t even know what a fibrosis is, nor that I had one.  

Managing IPF 

Besides more antibiotics and steroids, they told me I’d need an oxygen supply at home. Just a bit when moving, nothing when resting, all that might be temporary until the infection has healed. Ok, I didn’t like the machine, the cylinders and especially not the cannula in my nose, but long term it didn’t sound too bad to me.  

4 weeks later, I had another appointment with the lung specialist and was told that the fibrosis was a severe illness, but there was medication that could potentially slow down the disease. I was informed about possible side effects, but I gave it a try. Within a week, I started feeling really bad, my body wasn’t tolerating the medication. It also turned out that I needed Oxygen 24/7 and at a higher rate than in the beginning. After stopping the medication I felt much better, and I thought everything would be just fine as long as I carried an oxygen supply with me.  

Then August came, and, to make things worse, I travelled to Spain. 34 degrees and me trying to walk through lovely Spanish towns turned out to be impossible. The idea of an electric wheelchair was born.

This was a huge step. In the beginning, I thought that it was the end, but after my first trip, I loved the new freedom. Of course, I encountered obstacles I hadn’t recognised before but found a way around them or just asked other people for help. The great thing is, nearly no one dares to be rude to someone in a wheelchair.  

Advice 

Looking back at the last 10 months when it started going downhill pretty fast, there are a lot of things I could complain about, but for me, there are two things I’d rather highlight instead:  

• I’m not blaming anyone for late diagnosis! It’s a tricky disease, and, most importantly, an early diagnosis wouldn‘t have changed the result because there is no cure anyway. And the doctors can’t do much as long as YOU are unwilling to accept the facts. They just try to be nice and helpful, dealing with the bad news is your part!  

• I want to say a big THANK YOU to all the doctors and nurses, everyone has been very patient and took a lot of time talking to me – and that’s worth much more than pills and syringes. Especially since I’m in palliative care, I have the feeling that there are people who know me and really care about me – it’s not the end, it’s the beginning of the last journey.  

My final message would be that the main work after a diagnosis like this is on yourself. You will have to learn how to cope with many things, physically and mentally. Don’t just sit down and complain or moan or do nothing but hope that something won’t happen. Accept it and get the most out of what’s left!  

I decided to live ANYWAY. 

And one very last piece of advice: Don’t be too mad with your family and friends if they don’t act and react as you were hoping for. They are as overwhelmed as you and have no experience handling something like that.