Let’s Talk Exercise and Breath with Eimear Bell
When: 18 September 2024 at 3:00 pm
Where: Online
Staying active is one of the most important things lung fibrosis patients can do to maintain their physical and mental wellbeing. There are numerous studies which show exercise can significantly improve lung function and cardiopulmonary endurance for patients. It can also help with maintaining weight, improving energy, reducing stress and improving sleep. But exercise can be challenging, particularly if you feel breathless. This Let’s Talk session with ILFA’s expert exercise instructor Eimear Bell, will help participants to better understand the role exercise plays in disease management, provide tips for incorporating exercise into everyday activities, and a few breathing techniques that can support exercise and reduce anxiety.
Click here to register or go to: https://events.teams.microsoft.com/event/399c3e9b-d5ea-4414-aa9f-85cf5378b2c6@a269f87c-f8e5-4dd4-9341-aef9beeb799e
Lung Fibrosis Is a Battle
Every day, approximately three people in Ireland get diagnosed with lung fibrosis, a progressive and life limiting disease. Patients may have a dry cough for a while but may think nothing of it. Then perhaps after a few months of feeling breathlessness and fatigue along with the cough, they go to their doctor. Because idiopathic pulmonary fibrosis (IPF – the most common form of lung fibrosis) is a disease of exclusion, which means a diagnosis that is given after all others have been ruled out, diagnosis can sometimes take more than a year.
Once diagnosed, lung fibrosis patients in Ireland face a battle on two fronts – against the progression of their disease and against a healthcare ‘system’ that isn’t fit for purpose. Because the disease is complex, many are excluded from basic supports offered to patients with other diseases like pulmonary rehabilitation and access to specialty care close to home. As a result, patients are forced to travel sometimes great distances to receive the care they need.
Patients may also find that lung fibrosis is an expensive disease to manage as they are forced to bear the upfront burden of supplemental oxygen costs. At present, the HSE only reimburses after the expense is incurred, which can be more than 500 euros per month in some cases. There are also the increased electricity costs and travel costs that aren’t reimbursed. Many patients are unable to work and so the additional costs can be unmanageable for those on a limited budget.
We Fight Every Day
Originally founded in 2002, the Irish Lung Fibrosis Association (ILFA) has been fighting on behalf of patients for more than 20 years. ILFA is a patient-centred organisation. We regularly engage with the HSE, the medical community and other partners to educate and advocate on behalf of our members. Over the last several years, we’ve been working with the Government to increase access to services and in 2024 in particular, we’ve requested the Government provide grants and offsets for the high costs of managing the disease. We also provide supportive services directly to our members like patient information days, let’s talk sessions, exercise and other wellbeing classes.
Join the Fight
September is lung fibrosis awareness month. ILFA is working during the month in a variety of ways to raise disease awareness and to champion the cause of patients and the lung fibrosis community. Throughout September we will be featuring several member stories that demonstrate the strength and resilience of our community. Look for additional information on our website and social media pages.
If you or your loved one have been diagnosed with lung fibrosis, then you’re fighting too, but you don’t have to fight this battle alone. Join our community and we can provide help and support. For more information, contact us at info@ilfa.ie or 086 8715264.
Irish Lung Fibrosis Association
Registered charity number 20053437
Company registration number 367940
Charitable exemption number CHY 15462
ILFA developed the 2000 Steps a Day Challenge more than a decade ago based on an idea by Ms. Irene Byrne, Senior Physiotherapist with the Heart and Lung Transplant Unit at the Mater University Hospital Dublin. It is a simple concept suited to patients of all exercise levels. It can be used by those with mild or limited disease who are active and able to engage in exercise and those with more advanced disease who may be struggling with reduced physical ability.
Patients begin the programme by recording their step count for a few days using their pedometer and then aim to add an extra 2000 steps a day to reach a new baseline over the following days or weeks depending on their ability. 2000 steps reflect the average number of steps required to walk one mile. Research has shown multiple health benefits associated with 2000 steps per day and greater effects with more steps.
With the 2000 Steps More initiative helping to improve health outcomes for over a decade, ILFA realised it was time to review the efficacy of the programme. Our thanks to Dr Roisin Cahalan for conducting this review for ILFA, and to the Irish Research Council, who funded the work.
Read the report: Report 2000 steps_FINAL
Contact us to learn more about the 2,000 Steps and other ILFA programmes.
Lung fibrosis is a chronic, progressive, and life-limiting disease that results in severe shortness of breath, relentless cough, low oxygen levels, and extreme fatigue. ILFA estimates that approximately 1 in 1,600 people over the age of 65 in Ireland die from the disease each year.
For more than 20 years, the Irish Lung Fibrosis Association (ILFA) has provided education, advocacy and direct supports to patients and the wider lung fibrosis community. Despite our work over the years, today many patients are forced to fight a battle on two fronts – against the progression of their disease, and against an inequitable ‘healthcare system’ that denies them access to the care they need.
Equitable healthcare for lung fibrosis patients can only be realised through the establishment of a Clinical Care Programme. While we work toward this ultimate goal, we have interim priorities that if properly funded by the Irish Government, will go a long way in supporting lung fibrosis patients.
Today, in our 2025 pre-budget submission, ILFA is calling on the Government to fund a patient registry, to resource the development of a Clinical Care Pathway and to expand pulmonary rehabilitation access to include lung fibrosis patients. We’re also seeking the establishment of a tax rebate programme to ensure patients who depend on oxygen are not denied their fundamental human right to breathe.
Commenting on the submission, ILFA’s CEO, Maureen O’Donnell says: “It’s no secret Sláintecare is struggling to realise its vision of equitable healthcare for all. Ireland spends just 6.1% of GDP on healthcare, we’re in the bottom 15% of OECD countries. We see the result of underinvestment every day in waiting lists and trolley counts. For lung fibrosis patients, systemic underinvestment means many are denied basic, adequate care. As we look ahead to 2025 though we have an opportunity to invest in sensible changes that will make a big difference. This is all we ask for – that lung fibrosis patients get the care they need to help them manage their condition.”
Read ILFA’s Pre Budget Submission FINAL
with Lindsay Browne, Respiratory Advanced Nurse Practitioner, St. Vincent’s University Hospital will take place online on 14th August at 3:00 pm.The online event will take place on Tuesday 16 July at 2pm.
Purcell@ul.ie
too. Thank you!