Let’s Talk – Oxygen Use and Cough Management with Lindsay Browne, Respiratory Advanced Nurse Practitioner, St. Vincent’s University Hospital will take place online on 14th August at 3:00 pm.
The focus of this session will be helping patients with lung fibrosis manage oxygen use and coughing. A dry cough is often one of the first symptoms of lung fibrosis. It can be difficult to cope with, affecting everyday life, leading you to avoid exercise, talking, or other activities that may trigger it. Lindsay will provide tips for managing cough that will help you cope. She will also discuss oxygen use. Many lung fibrosis patients need oxygen at some point in their treatment. Getting started with oxygen can be challenging, but using it can help you to remain active. Lindsay will help you understand more about the role of oxygen therapy and provide tips on its use.
Register by emailing info@ilfa.ie or calling 086 871 5264 or via the link below
The ILFA Ecumenical Service of Prayer and Reflection will take place on Saturday 5th October 2024 at Our Lady of Mount Carmel, Whitefriar Street Church, Aungier Street, Dublin 2 at 4pm.
If you would like to help with a reading or have suggestions for a special poem or prayer, please get in touch. We would also be grateful to have some volunteers to help with the event on the day.
If you would like a family member remembered during the candle lighting ceremony, please email their name to info@ilfa.ie
We look forward to welcoming you to Whiteriar Street Church in October.
Keeping Well and Coping with Pulmonary Fibrosis
The Irish Lung Fibrosis Association will host an online ‘Let’s Talk’ session on keeping well and coping with pulmonary fibrosis with Dr Elizabeth O’Brien, Principal Specialist Psychologist, Respiratory Medicine, at the Mater Misericordiae University Hospital.
The online event will take place on Tuesday 16 July at 2pm.
Register by emailing info@ilfa.ie or calling 086 871 5264
Festive Online Yoga Class
A special and festive Christmas yoga class with ILFA’s Patron Michael Darragh MacAuley will take place on Friday 15th December at 11am.
Wear your festive jumper and Santa hats to get into the festive spirit!
We can’t wait!!!
Email info@ilfa.ie or call 086 871 5264 to register
Patient Information Day, November 2023
The next ILFA Patient Information Day will take place on Saturday 18th November from 11am to 1pm, via Zoom. Join us online to learn more about lung fibrosis and maximising your health. All are welcome. Speakers will include
1. Professor Anthony O’Regan, Respiratory Consultant, University Hospital Galway
2. Olive McCafferty, Respiratory Physiotherapist, Mater Hospital
3. Patricia Davis, Clinical Nurse Specialist, Respiratory Integrated Care, Wicklow
4. Lindsay Brown, Respiratory Advanced Nurse Practitioner, St Vincent’s University Hospital
5. Leah Harrington, Health and Wellbeing Coordinator, Living Well Programme, HSE
“Let’s talk entitlements for lung fibrosis patients”
ILFA will host an online “Let’s talk entitlements” meeting on Tuesday 10 October at 2pm with Helen Ryan, Respiratory Advanced Nurse Practitoner at Galway University Hospital.
If you have any questions, they can be submitted in advance of the meeting.
Register to attend by emailing info@ilfa.ie or calling 086 871 526
Patient Information Day
The next ILFA Patient Information Day will take place
on Saturday 18th November from 11am to 1pm, via Zoom.
Join us online to learn more about lung fibrosis and maximising your health.
Speakers to be confirmed.
2000 Steps Extra Challenge on Easter Monday
ILFA’s 2000 Steps Extra Challenge will take place on Easter Monday 10th April.
We’re asking everyone to go for a walk or run from your home and commit to take 2000 steps extra (one mile more) to help raise awareness of lung fibrosis and funds for ILFA.
If you would like to take part in the ILFA 2000 Steps Extra Challenge on Easter Monday, you can register by emailing info@ilfa.ie for your neck warmer and poster.
Remember to send us a photo of your virtual walk so we can share images and raise awareness.
You can donate securely online to the 2000 Steps Extra Challenge via the following links
The next Patient Information Day from the Irish Lung Fibrosis Association will take place on 25th March at 11am via Zoom. We hope you will join us to learn more about lung fibrosis. All are welcome.
Register in advance via the link http://bit.ly/41Rnewn or alternatively email info@ilfa.ie or call 086 871 5264
Our speakers will include
• Professor Killian Hurley, Respiratory Consultant at Beaumont Hospital
• Donna Langan, Respiratory Advanced Nurse Practitioner at Galway University Hospital
• Grace O’Sullivan, Respiratory Clinical Nurse Specialist at Cork University Hospital
• Dr Roisin Cahalan, Lecturer in Respiratory and Cardiovascular Physiotherapy in the School of Allied Health in the Faculty of Education and Health Sciences at University of Limerick
• Dr Anne Marie Russell, Senior Lecturer at University of Exeter Medical School.
“Let’s Talk Nutrition for Lung Fibrosis”
Sandra Murphy, Clinical Specialist Dietitian at the Mater Misericordiae Hospital, will take part in ILFA’s “Let’s Talk Nutrition for Lung Fibrosis” on Friday 31 March 2023 @ 12pm via Zoom. Please contact ILFA by emailing info@ilfa.ie or calling 086 871 5264 to register to attend. Questions can be submitted in advance by emailing info@ilfa.ie.
“Let’s Talk Medicaton”
Lynn Fox, Respiratory Advance Nurse Practitioner at the Mater Miserericordiae University Hospital, will take part in ILFA’s “Let’s Talk Medication” session on Monday27th February at 2pm. All are welcome to this online event that will take place via Zoom. Please register at info@ilfa.ie or call 086 871 5264.
Questions on medication can be submitted in advance.
ILFA Patient Information Day
The next ILFA Patient Information Day will take place online on Saturday 25th March at 11am via Zoom. All are welcome to attend this free online educational event.
Register
via http://bit.ly/41Rnewn
email info@ilfa.ie
call 086 871 5264
Patient and Public Involvement Advisory Group Meeting
ILFA’s next Patient and Public Involvement Advisory Group Meeting will take place on Thursday 25th February at 5pm. Thank you to the patients, carers, scientists, researchers and healthcare professionals who participate in this group. A link to join the online meeting has been sent to all members of the group in advance of the meeting.
Festive Dance Class
Join ILFA for an online Festive Dance Class on Tuesday December 20th at 4pm with choreographer Tracey Barnes and members of the Dancing for IPF Team. All are welcome.
Don’t forget to wear your Christmas jumper and hat!
Register in advance by emailing info@ilfa.ie or calling 086 871 5264
Online Yoga Classes
The Irish Lung Fibrosis Association (ILFA) is delighted to announce a new 6-week series of online yoga classes with Michael Darragh Macauley.
The classes will start on Friday 11th November at 10.30am via Zoom.
Please register in advance to join the class by emailing info@ilfa.ie or calling 086 871 5264
The class is free to all members registered with ILFA.
Namaste!
ILFA Patient Information Day
The next ILFA Patient Information Day will take place virtually on Saturday 5 November 2022 from 11am to 1pm.
Our speakers include
Dr Liam Chawke – Respiratory Consultant, Kerry University Hospital
Lindsay Browne – Respiratory Advanced Nurse Practitioner, St Vincent’s University Hospital
Eimear Bell – Respiratory Physiotherapist
Carita Bramhill – PHD Researcher, Trinity College Dublin
Register via the Zoom link below or call ILFA on 086 871 5264 or email info@ilfa.ie.
“Let’s Talk Oxygen for Pulmonary Fibrosis” with Lindsay Browne, Respiratory Advanced Nurse Practitioner at St Vincent’s University Hospital, will take place on Wednesday 9th November 2022 @ 4pm via Zoom.
Please register in advance by calling 086 871 5264 or emailing info@ilfa.ie
Questions can be submitted in advance via email.
“Let’s Talk Unmet Needs for Lung Fibrosis Patients”
Patients and carers are invited to ILFA’s online discussion entitled “Let’s Talk Unmet Needs for Lung Fibrosis Patients” with team members from The BioInnovate Program based in University of Galway. The program takes a ‘Needs Led Innovation’ approach (process) to create novel healthcare solutions to previously unmet and unrecognised problems.
The 2022 Respiratory and Anaesthesia Team come from clinical, engineering and business backgrounds. The team is keen to speak to patients on the challenges of their condition. The team hopes to identify a broad range of needs which could have new improved solutions for patients and users developed.
Join us online on Monday 24th October from 4-5pm to discuss your specific challenges or unmet needs from diagnosis, treatment or day to day living with your condition. Do you face
-Challenges with medication?
-Oxygen support?
-Challenging symptoms?
-Specific support areas / needs – things you find that help but are hard to get
If you would like to take part, please register in advance by emailing support@ilfa.ie
ILFA Service of Prayer and Reflection
The ILFA Service of Prayer and Reflection will take place at Our Lady of Mount Carmel Church, Whitefriar St, Aungier Street, Dublin 2 on Saturday 15th October at 4pm. We are delighted to return to an in-person event and look forward to welcoming our guests. Please let us know if you plan to join us so we can organise numbers for some light refreshments afterwards.
During the service, we will light candles for those patients whose names have been submitted to ILFA by family members. Please email info@ilfa.ie or call 086 871 5264 if you would like your loved one remembered.
The service will be live-streamed and available to watch via the church website www.whitefriarstreetchurch.ie, for those who cannot attend the church in person.
If you cannot attend, we encourage ILFA members to come together virtually as a community and light a candle in their home at 8pm on the evening of Saturday 15th October to support or remember loved ones affected by lung fibrosis. You can send your photos to info@ilfa.ie if you would like to share your images.
We hope you will join us in Dublin for this uplifting community event.
Sing Strong for Pulmonary Fibrosis
The Irish Lung Fibrosis Association (ILFA) is pleased to announce the start of a new ‘Sing Strong for Pulmonary Fibrosis’ class with Ciara Meade, Choir Mistress,
The classes will take place every Wednesday at 12.30pm starting on 21 September 2022 for 12 weeks.
The online class is free of charge to lung fibrosis patients registered with ILFA. No singing experience or even a good singing voice needed. All are welcome to this fun, sociable and beneficial class.
Email info@ilfa.ie to register in advance.
ILFA Patient and Carer Survey
We need your help please …
ILFA has developed a Patient and Carer Survey to understand the physical, emotional, and financial impact of living with Lung Fibrosis in 2022. The intended audiences for this survey include ILFA members who are Lung Fibrosis patients, those who have received a lung transplant for Lung Fibrosis, as well as caregivers to people diagnosed with Lung Fibrosis. The survey takes about 10 minutes to complete and there is a chance of winning a One 4 All voucher (€100 for the winner and €50 for the runner-up).
ILFA will use this anonymous information to campaign for greater awareness of Lung Fibrosis. Please complete the survey via this link by July 12th 2022 https://bit.ly/ilfa22
Alternatively you can call 086 871 5264 if assistance is needed.
“Let’s Talk PPI”
Join ILFA on Monday 18th July at 4pm for our “Let’s Talk PPI” information session.
PPI in research means research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
ILFA is committed to PPI to ensure patients’ and carers’ perspectives and priorities influence our research. This year ILFA plans to set up a PPI Research Advisory Group to inform our research activities, enhance collaborations with researchers and support and influence research relating to lung fibrosis.
Dr Michelle Flood and Dr Chiara DeSanti from the School of Pharmacy and Biomolecular Sciences at the Royal College of Surgeons of Ireland will join us to discuss PPI for lung fibrosis patients and asnwer questions.
Email info@ilfa.ie or call 086 871 5264 to join.
All are welcome.
“Let’s Talk Breathing Techniques”
Join Eimear Bell, Respiratory physiotherapist, for an online session entitled “Let’s Talk Breathing Techniques” for pulmonary fibrosis patients.
Eimear will give a presentation on breathing techniques that will be followed by a Questions & Answers session.
Please submit any questions you may have in advance and Eimear will do her best to answer them in the allotted time. The meeting will take place via Zoom and we can provide you with assistance if necessary.
Please email info@ilfa.ie or call 086 871 5264 or 086 057 0310 to register to attend.
Let’s Talk Oxygen
The Irish Lung Fibrosis Association will host a “Let’s Talk Oxygen” Questions and Answers session with Patricia Davis, Clinical Nurse Specialist, Respiratory Integrated Care, on Friday 29th April at 11am via Zoom. Please submit questions and register in advance by emailing info@ilfa.ie
2000 Steps Extra for ILFA!
ILFA is delighted to announce that our annual event “Easter Monday 2000 Steps Extra for ILFA” will take place virtually on Monday 18th April, 2022. We need patients, carers, family members, healthcare professionals, industry supporters to participate and commit to taking at least an Extra 2000 Steps (1 mile more) to raise awareness of pulmonary fibrosis and raise funds to support ILFA’s work.
You can take part from anywhere – in your garden, indoors from your home, outdoors etc. The important goal is to step it out for your health!
Please contact ILFA if you would like to sign up for this walking/running challenge and we will send you a special fundraising pack. Remember to take a photo and log your step count with us! We’ll have fun counting the total steps taken to see how far we reach!
Contact ILFA on 086 871 5264 or email info@ilfa.ie for more information
ILFA is delighted to announce a new donline ance exercise and wellness initiative
in collaboration with Dr. Vikram Niranjan, UCD School of Public Health, Physiotherapy and Sports Science, and Tracey Barnes, Dancing for Health CIC, UK.
… Want to learn more about this exciting and innovative programme? Join us for a “Let’s Talk Dancing for Pulmonary Fibrosis” session on Tuesday 5 April 2022 @ 3.15pm via Zoom. Please email info@ilfa.ie or call 086 871 5264 to register in advance.
“Dancing for health and wellbeing: A feasibility study of examining health impacts of dancing among idiopathic lung fibrosis patients” is funded by an Irish Research Council New Foundation 2021 Award.
ILFA’s next Patient Information Day
The next Patient Information Day will take place online on Saturday 12th March 2022 from 11am until 1pm. The meeting will take place using the Zoom online platform. If you would like help using Zoom, please contact us in advance and we can provide you with support.
Our speakers will be confirmed nearer to the time and announced on the website (www.ilfa.ie), and Facebook and Twitter pages. Please register with ILFA in advance to attend this meeting by calling 086 871 5264 or emailing info@ilfa.ie
Weekly Online Exercise Classes with ILFA
ILFA’s online exercise classes for lung fibrosis patients take place weekly via Zoom. The classes are free of charge to all lung fibrosis patients who are registered as members with ILFA. The classes usually take place at 11am and are led by a Respiratory Physiotherapist.
Please register in advance to receive safety information and advice for the classes. Email info@ilfa.ie or call 086 871 5264 to join the class. We look forward to seeing you!
Exercise is the Best Medicine
Exercise is vitally important for lung fibrosis patients and ILFA’s exercise resources encourage you to exercise safely while taking your health limitations into account.
Speak with your respiratory nurse specialist, physiotherapist, and doctor for more information about the benefits of exercise and how to get started.
ILFA’s Exercise Resources
Some of ILFA’s exercise resources are included below. These are available free of charge to lung fibrosis patients and healthcare professionals working in respiratoy medicine. Please contact ILFA to request our free resources.
ILFA Therabands for performing stretching exercises
Online Exercise Classes with ILFA
ILFA’s online exercise classes for lung fibrosis patients take place weekly on Monday, Wednesday and Thursday via Zoom. The classes are free of charge to all lung fibrosis patients who are registered as members with ILFA. The classes are led by a Respiratory Physiotherapist. Please register in advance to receive safety information and advice for the classes. Email info@ilfa.ie or call 086 871 5264 to join the class. We look forward to seeing you!
Click here if you would like to know more about using Zoom. If you have any questions about using Zoom to join the classes, please get in touch and we will talk you through the process.
Walking is an ideal exercise for Lung Fibrosis patients
The 2000 Steps a Day Challenge was specifically designed for Lung Fibrosis patients. This challenge aims to help you achieve your best level of fitness and wellbeing while considering your limitations and oxygen requirements. The 2000 Steps a Day Challenge was devised by Ms. Irene Byrne, Senior Physiotherapist with the Heart and Lung Transplant Unit at the Mater University Hospital Dublin and developed with ILFA.
The ILFA 2000 Steps a Day walking pack contains
The 2000 Steps a Day leaflet that explains the benefits of walking for Lung Fibrosis patients and gives tips and advice on how to get started and stay safe. Click here to read the Get Moving with ILFA 2000 Steps a Day Challenge leaflet.
An inspirational poem called “Promises to Yourself” by Christian D. Larson and a Contract for Success for you to sign and commit to the 2000 Steps a Day Challenge.
A pedometer (step counter) to estimate the number of steps you take, the distance travelled (miles and kilometres) and the number of calories used when walking.
A high visibility reflector vest to help keep you and your walking companion safe while out walking. The reflector vests have been kindly supplied to ILFA by the Road Safety Authority.
An exercise diary to record your progress with the 2000 Steps a Day Challenge.
An ILFA pen.
A Donation card if you would like to make a donation to ILFA.
We hope that you will enjoy this exercise challenge and it will motivate you to incorporate an extra 2000 steps into your daily routine. We want you to use the programme to help kick start, improve and maintain your level of fitness.
How to order your 2000 Steps Walking Pack
Please contact ILFA to request your 2000 Steps a Day walking pack by writing to ILFA, PO Box 10456, Blackrock Co. Dublin via email info@ilfa.ie or by calling 086 871 5264.
All of ILFA’s resources are provided free of charge to lung fibrosis patients registered with ILFA and to healthcare professionals working in respiratory medicine.
The History of ILFA’s 2000 Steps a Day Walking Challenge
The 2000 Steps a Day Challenge was devised by Ms. Irene Byrne, Senior Physiotherapist with the Heart and Lung Transplant Unit at the Mater University Hospital Dublin and developed with ILFA. In 2014, ILFA’s 2000 Steps A Day Challenge won the Irish Healthcare Award for the Best Patient Organisation Project of the Year.
Please note that the ILFA 2000 Steps a Day Challenge is the property of ILFA and cannot be copied or reproduced without permission. For further information, please email info@ilfa.ie or
call 086 871 5264
Peer support and talking to others is important and may help and reassure you that you are not alone.
The ILFA Support Group network puts patients and carers in touch with each other to share their stories, experiences, and tips for living well with lung fibrosis.
Be Inspired by ILFA’s Tip of the Week and Quote of the Week
Each week ILFA features a new Tip of the Week and Quote of the Week to help and inspire our members.
We hope you will benefit from these tips and inspiring words.
Tip of the week
Exercise, exercise, exercise!!!
Exercise is as important as medication. You should prioritise exercise as well as following your doctor’s instructions when taking medicine and using oxygen.
Daily exercise will help to keep your muscles strong and your lungs working to the best of their capacity. The ILFA 2000 Steps a Day exercise challenge is designed specifically for lung fibrosis patients taking their limitations into account. Email info@ilfa.ie or call 086 057 0310 or 086 871 5264 to request your 2000 Steps Exercise Pack.
Quote of the week
“Once you choose hope, anything’s possible.” Christopher Reeve
What is Wellbeing?
Wellbeing is a term used to describe how you’re feeling about yourself and the world around you, and how able you are to cope with everyday life, most of the time. It’s much more than how happy you are, it also includes how satisfied you are with your life, and whether you feel a sense of purpose and agency.
If you feel a sense of positive wellbeing you are more likely to feel positive about life and want to be a part of things that are happening around you. If you are struggling with positive wellbeing you may find that you are less interested in doing things you once enjoyed. You may feel more anxious and tense and find it harder to cope with daily life and the stress of your condition.
Resilience, the ability to adapt or cope with challenging life experiences, is key in managing your wellbeing. Following are some resources which may prove helpful to you in supporting your wellbeing. ILFA’s exercise classes, support groups, and other health and wellbeing programmes may also help.
Mindfulness and Mental Health Resources
The following websites and mobile applications may be useful to help you support your mental wellbeing.
HSE’s Mental Health website provides a variety of mental health supports and services, most of which you can access without a referral.
Mental Health Ireland – Information and support for people experiencing mental health difficulties. Information line (01) 284 1166 (from 9am to 5pm Monday to Friday) or email info@mentalhealthireland.ie for more information.
Headspace The app can be downloaded onto a smart device and you can try it for FREE.
10 Percent Happier – a website with courses, free meditations, a podcast and many other helpful mindfulness resources.
Stress Control– This website will help provide you with skills to fight stress (for most of us, a mix of anxiety and depression) and boost your wellbeing.
HSE’s Living Well Programme, a six week self management programme for people living with long term or chronic health conditions.
If you are struggling with increased anxiety, feeling depressed or have suicidal thoughts, please seek help and contact your GP or go to your local Emergency Department for help.
The ILFA Ecumenical Service of Prayer and Reflection will take place on Saturday 5th October 2024 at Our Lady of Mount Carmel, Whitefriar Street Church, Aungier Street, Dublin 2 at 4pm. 
November from 11am to 1pm, via Zoom.
Sandra Murphy, Clinical Specialist Dietitian at the Mater Misericordiae Hospital, will take part in ILFA’s “Let’s Talk Nutrition for Lung Fibrosis” on Friday 31 March 2023 @ 12pm via Zoom. Please contact ILFA by emailing info@ilfa.ie or calling 086 871 5264 to register to attend. Questions can be submitted in advance by emailing info@ilfa.ie.
