31st October Let’s Talk Nutrition

Good nutrition is important for everyone, but for people with pulmonary fibrosis it’s particularly important. Eating a proper diet helps maintain a healthy weight, provides energy, and keeps the immune system working. Being overweight can put extra pressure on the lungs making it harder to breathe. On the other hand, being underweight can lead to a weakening of your breathing muscles. It’s a difficult balance.

In ILFA’s latest Let’s Talk session, Nutrition for People Living with Pulmonary Fibrosis, Sandra Murphy, Clinical Specialist Dietitian in Cystic Fibrosis Ireland & Heart & Lung Transplant Unit of the Mater Hospital will discuss the link between diet and health and provide guidance for attendees in maintaining proper nutrition to support optimal health.

Register for this free event here: https://events.teams.microsoft.com/event/c6aab338-37ca-4996-b6f4-86a223b4be30@a269f87c-f8e5-4dd4-9341-aef9beeb799e

ILFA’s next Patient Information Day will take place online on:

Thursday 28th November 2024 from 11.00am to 1.30pm

Our panel of speakers will be announced shortly but sessions will include information regarding the latest developments in Pulmonary Fibrosis as well as several key updates regarding ILFA’s work on behalf of lung fibrosis patients.

There is no charge for this event. To register, email info@ilfa.ie or click on the following link: https://us06web.zoom.us/webinar/register/WN_bDmWpiNiTlWiwnToescDIg#/registration

For September’s Lung Fibrosis Awareness month, Nicola Cassidy, ILFA Director, wrote an article on the current state of Interstitial Lung Disease in Ireland. Read this informative article here:

Interstitial Lung Disease – An update from the Irish Lung Fibrosis Association

Matt Cullen’s Journey with Lung Fibrosis

For more than 40 years Matt Cullen has exhibited his artwork in galleries across Ireland. They are beautiful works of acrylic, oils, pen and ink drawings and other mediums, inspired by artists like MC Escher and Georges Seurat that reflect his fascination with science. In 2010, while still actively exhibiting his works, he began to experience the hallmark symptoms of lung fibrosis, persistent cough, breathlessness and fatigue.

At first the diagnosis didn’t seem to significantly impact Matt’s life, but in 2013, after a serious chest infection Matt received an even greater blow when he found he wasn’t just facing lung fibrosis, he was also diagnosed with number of other related diseases that increased the severity of his lung fibrosis diagnosis. It was during this difficult time that Matt learned of the Irish Lung Fibrosis Association (ILFA).

Living with lung fibrosis can be very challenging both physically and psychologically. For Matt, being in community with other lung fibrosis patients has been extremely beneficial, especially psychologically. Matt’s active engagement with the local Dublin lung fibrosis support group has proven to be a positive influence in his ability to manage his health issues. ILFA’s Let’s Talk webinar series has also been quite beneficial as has been the HSE’s Stress Management and Chronic Disease Self-Management programmes.

Staying active can also be challenging, particularly because of the breathlessness which is a core symptom of the disease. Despite the challenges, exercise 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.

For Matt, the key to maintaining his fitness has been walking and in this, he has availed of ILFA’s 2000 Steps A Day Challenge.  Matt also regularly participates in thrice weekly exercise classes. Thanks to his active lifestyle, Matt now feels well enough engage in his favourite activities of gardening, volunteering and art.

He also feels well enough to give back. Matt’s passion is helping lung fibrosis patients, and as a member of the European Lung Foundation Pulmonary Fibrosis Patient Advisory Group, Matt helped develop a Patient Supportive Guide which is now available in 17 languages. Matt has also been a tireless advocate for ILFA, leading the Dublin support group, taking part in exercise and yoga videos, and giving discussions on lung fibrosis in Ireland and across Europe. Matt’s ethos of community volunteering was recognised in 2015, when he won the All-Ireland Volunteer of the Year Award in recognition of more than 20 years of dedicated volunteering with Swords Tidy Towns. In 2024 he celebrates fifty years of volunteering.

Matt continues to be strong and positive, actively managing his condition with the support of his medical team. He remains an established artist, but for many years Matt thought he’d never work with oil paint again as he was advised they could cause further lung damage. Fortunately, he heard about a slow drying non-toxic acrylic paint which has allowed him to return to his love of painting. Matt held his first solo art exhibit in 2015 and another one subsequently in 2019, donating 50% of the proceeds to ILFA.

September is lung fibrosis awareness month and ILFA is raising disease awareness and championing the cause of patients and the lung fibrosis community.  For more information, contact us at info@ilfa.ie or 086 8715264. 

Breda Coughlan’s story began in the spring of 2019 when she was on holiday in Rosscarberry Co. Cork. Breda had always enjoyed walking, but on this day she struggled to walk up an incline that wouldn’t have been difficult for her in the past. Upon returning home, she visited her GP who referred her to a cardiologist for an angiogram. The test came back normal and so no diagnosis was made, but Breda still struggled to catch her breath. She went back to her GP and was treated for fluid on the lungs. She was also sent for an x-ray and after a spot was found on her lungs, Breda was referred to Beaumont Hospital where a pulmonary test and CT scan diagnosed Idiopathic Pulmonary Fibrosis (IPF).  

Not realising the severity of the condition, Breda was initially relieved on hearing this diagnosis because it wasn’t cancer. But when she realised that IPF is progressive and, without a lung transplant, incurable, Breda was filled with dread.  This is when her family began to rally around her. Her daughters attended a Patient Information Day hosted by the Irish Lung Fibrosis Association (ILFA) which gave them insights into her diagnosis. They brought home information leaflets for her from the event about the condition but it was a month before Breda could bear to look at them. 

As she began to come to terms with her condition, Breda realised that this was fight between her and IPF, and she wanted to win. She registered for ILFA’s ongoing rehabilitation exercise classes and yoga classes to help her maintain her fitness, and she participated in “Sing Strong” and seated dancing classes. All of this physical activity helped Breda maintain her lung function and she began to see small improvements in her condition. Encouraged by this, her family, a massive source of support, organised a personal trainer to come to her house once a week with an exercise program to improve her fitness and lung function.  

According to Breda, “I am probably fitter now then I have ever been!!! ILFA’s Dublin support group meetings where you can talk to fellow patients and ask how they are coping and get advice is a wonderful resource as well.” 

Breda is delighted that she can still travel for important events. “My condition did not stop me visiting my son and family in Los Angeles. When we visited them in 2023, we celebrated our 51st wedding anniversary where my son and his family took us to Las Vegas to the Little White Chapel to renew our wedding vows. Elvis walked me down the aisle and performed the ceremony. It was a lovely day enjoyed by all especially our grandchildren.” 

Since December 2023 Breda has been on anti-fibrotic medication and her condition continues to remain relatively stable. While she has experienced some side effects, they have not prevented Breda from continuing to live life on her terms. She’s a fighter and her family fights with her, firmly in her corner as she battles IPF every day. 

September is lung fibrosis awareness month and ILFA is raising disease awareness and championing the cause of patients and the lung fibrosis community.  For more information, contact us at info@ilfa.ie or 086 8715264. 

Denise Campbell and her husband Charlie, a farmer and father of three, have been living with lung fibrosis since he was first diagnosed in 2023. The dry cough began in Jan 2022 following a positive COVID test and by April 2022 the cough was incessant.  After several months of cough and breathlessness just performing his daily duties, Charlie attended the Emergency Department at University Hospital Galway where a CT scan highlighted a problem, but a diagnosis was not made.  

The next 12 months were an extremely stressful time as Charlie and Denise searched for a diagnosis. No one seemed to have any answers to Charlie’s increasingly serious health condition. In April 2023, out of sheer desperation, Denise telephoned the Irish Lung Fibrosis Association (ILFA). The wealth of information they received was life changing, including signposting to the Respiratory Medical Centre at University Hospital Galway. From that point forward Charlie received excellent and expert care for his condition including from his medical team and respiratory nurses. This care made a huge difference in their lives.  

Charlie was immediately diagnosed with fibrotic organizing pneumonia, a type of interstitial lung disease (ILD). He found he needed supplemental oxygen and would have limited mobility. Despite this overwhelming situation, Charlie continued to work the farm with fantastic support from family and friends. He hoped his ability to work would be enhanced by attending pulmonary physiotherapy. Although the waiting list was long, Charlie was able to attend an 8-week class which improved his physical strength and wellbeing. Unfortunately, after that class Denise and Charlie found they had exhausted the available services for lung fibrosis patients. They learned they were not eligible for physiotherapy classes, mental health or financial supports.       

“The point I want to make to the Irish Government” Denise Campbell said, “is that if you know where to look, we have excellent services and professionals working in lung health. They have saved Charlie’s life. We MUST continue to ensure that these services are fully supported in every possible way and that they are developed and enhanced as soon as possible. We struggled for more than a year to get a diagnosis and reach supporting services.”  

Denise went on to say, “Much more needs to be done to ensure that every patient in Ireland who needs respiratory services can reach them. We fully support ILFA’s pre-budget submission to the Irish Government, and appeal to our elected representatives to do what they can to achieve these life changing requests. “ 

The only “cure” for lung fibrosis is a lung transplant and recently Charlie received just that from the Heart and Lung Transplant Centre at the Mater Hospital. It’s a breath of new life for Charlie and as he recovers, he looks forward to getting back to the life he knew before lung fibrosis cast its dark shadow over his family. 

Maureen O’Donnell, CEO of the Irish Lung Fibrosis Association, said “we are absolutely delighted for Charlie and his family. He has been so brave, and now the lung transplant will give him a new lease on life. 

While Charlie’s story is truly inspirational, it is also unfortunately, rare. 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. Diagnosis is often delayed; patients are excluded from necessary medical services; some travel great distances to receive proper care; and patients can literally slip into poverty because of high healthcare costs. It’s unnecessary and unacceptable.” 

September is lung fibrosis awareness month and ILFA is raising disease awareness and championing the cause of patients and the lung fibrosis community.  

For more information, contact us at info@ilfa.ie or 086 8715264. 

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