Journeys through pulmonary fibrosis

In this episode of the ‘Journeys Through Pulmonary Fibrosis’ podcast, our host Steve Jones sits down with two guests from the USA and Norway to discuss the importance of connecting with people who live with pulmonary fibrosis at different stages of their journey. They also discuss the many different ways in which patient organizations provide support, globally and locally. Hear more from our guests on how patient organizations will continue to fight for all those impacted by this condition.

In this episode of the ‘Journeys Through Pulmonary Fibrosis’ podcast, our guests share how family, friends and support groups are invaluable to their journey, often providing that much needed support and hope for those living with pulmonary fibrosis and their loved ones. Hear more about the ongoing efforts of individuals and organizations working to ultimately improve the outcomes for people living with pulmonary fibrosis.

In this special episode Liz tells us about her experience of living with RA-ILD, which is short for rheumatoid arthritis-associated interstitial lung disease. We explore the profound impact of this life-changing diagnosis on Liz and her loved ones as well as the need for increased awareness of the condition. Throughout Liz provides advice and strategies for maintaining a positive outlook despite the challenges RA-ILD presents.

In this episode, we explore how innovating today could have a positive impact on those diagnosed with pulmonary fibrosis. We are joined by extraordinary guests, including researchers, healthcare providers, innovators, and a patient impacted by this rare disease. Keeping patients’ lived experiences front and center can help lead to new ideas and progress, all while inspiring us to remain hopeful for the future.

In the fifth and final episode of season 3, we learn about the impact that pulmonary fibrosis can have on relationships with family and friends, and even on the more intimate aspects of partner relationships. Our contributors also take time to emphasize the value that they derive from healthy and supportive relationships when living with this challenging condition.

In our fourth episode, we examine the importance of shared decision making, which helps empower patients to make choices about their disease management in collaboration with their medical teams. We hear from people who are living with pulmonary fibrosis, a wife and care partner and from medical specialists, each underlining the value of shared decision making and providing some examples of this best practice in action.

In the third episode of Season 3 of our ‘Journeys Through Pulmonary Fibrosis’ podcast series, we explore the role multidisciplinary teams (MDTs) play in providing care for people living with pulmonary fibrosis. Our guests first help us to understand what an MDT is, who participates and how the team functions. We then examine the benefits and improvements in care that the approach can deliver for people with pulmonary fibrosis. We also hear about some of the challenges that an MDT approach can bring and discuss how their role may evolve in the future.

In the second episode of Season 3 of our Journey Through Pulmonary Fibrosis podcast, we are once again joined by several people who live with the condition, including a wife and care partner, and by a group of specialists. Hear about some of the challenges that people with pulmonary fibrosis face in terms of meeting their dietary and nutritional needs and learn about how these challenges are best managed through tools and techniques like keeping a food diary and managing portion sizes.

In the first episode of Season 3, we are joined by a courageous group of guests that includes people living with pulmonary fibrosis, a care partner, and specialized healthcare providers to explore the mental health impact of the disease. The discussion explores the impact of receiving a pulmonary fibrosis diagnosis and the ongoing challenges of living with the disease. Our guests share the mental and emotional challenges they face, as well as helpful tips on how to cope, where to find support and how they continue to find hope.

Childhood interstitial lung disease (chILD) includes more than 200 rare disorders with debilitating symptoms that can include cough, difficulty breathing and rapid breathing. With no established diagnostic criteria, few management guidelines, and no approved therapies, chILD can have a devastating impact on patients and their loved ones. In this episode Dr. Robin Deterding, Director of the Breathing Institute, Children’s Hospital Colorado, speaks to Carlee Gilbert, mother of Finn, who is now aged 13, and Director of chILD Foundation UK, about her experience with raising her son with this condition. The episode explores the practical, emotional, and family challenges that chILD presents and offers advice to other parents facing this disease. Carlee describes how she found hope by dedicating her professional life to research and support for others, so they don’t feel alone in their journeys.

In this special episode of Journeys through Pulmonary Fibrosis we a proud to collaborate with FESCA. Sue Farrington, President of the Federation of European Scleroderma Associations (FESCA) and Chief Executive of Scleroderma and Raynaud’s UK, speaks with Ilaria, who lives with Scleroderma and is Vice Chair of FESCA, and her husband Sergio. Ilaria was diagnosed with Scleroderma in 1996, and lung involvement in 1997, just three months after her relationship with Sergio began. They discuss their experience of scleroderma with lung involvement, how it has affected their relationship, how it has affected them as individuals, and what advice they would give their younger selves.

In the seventh and final episode of season two, we are joined by our courageous group of guests made up of those living with various pulmonary fibrosis conditions, their care partners and specialized doctors. In this episode, we explore the benefits pulmonary rehabilitation can have on those living with the condition in helping them understand their new limits. While these adjustments can be frustrating, we’ll hear how our guests have not only adapted their new exercise routines but also their mental outlook on fitness to remain positive and as healthy as possible.

In the sixth episode of season two, we are joined by our courageous group of guests made up of those living with various pulmonary fibrosis conditions, their care partners and specialized doctors. In this episode, we explore the different and unpredictable ways pulmonary fibrosis can progress and the various approaches our guests have taken to confront the condition head-on. While the unpredictability can make planning for the future a challenge, we’ll hear how it has taught our guests resilience and has given them an opportunity to truly live life in the moment.

In the fifth episode of season two, we are joined again by our exceptional group of guests made up of those living with various pulmonary fibrosis conditions, their care partners and specialized doctors. In this episode, we discuss the key role support groups play in not only finding accurate information, but also a like-minded community of individuals on a similar path. While seeing those at a later stage in their condition can be challenging, all our guests agree that support groups have given them hope and guidance for the future.

In the fourth episode of season two, we are joined again by our exceptional group of guests made up of those living with various pulmonary fibrosis conditions, their care partners and specialized doctors. In this episode, we discuss the crucial role of care partners, from helping the patients better understand the initial diagnosis to taking on more of the household jobs. This shift in dynamic can be a hard adjustment, but talking to fellow carers going through a similar experience can really help. Ultimately, if the carers aren’t able to get the right support then neither are the people living with these conditions.

In the third episode of season two, we are joined again by our new, exceptional group of guests made up of people living with various pulmonary fibrosis conditions, care partners and specialized doctors. In this episode we explore the moment of diagnosis and the different ways in which patients react to this life-altering news. Getting a diagnosis for a rare condition can leave them with more questions than answers however finding accurate information is often a challenge in itself. So join us as they talk about the importance of being proactive following a diagnosis and give advice to HCPs on how to best to break the news.

In the second episode of season two, we are joined again by our new, exceptional group of guests made up of people living with various pulmonary fibrosis conditions, care partners and specialized doctors. In this episode we explore the journey to diagnosis. Getting a diagnosis for a rare condition such as pulmonary fibrosis can be difficult and patients can often go undiagnosed for years. In this episode, we hear about the emotions that patients felt when meeting with various specialists, and the advice they would give to others on a similar journey.

This special episode features a recording of a one hour conversation of the twitter spaces event 'shedding light on pulmonary fibrosis' that took place on the 16th September 2021. The discussion focused on the signs and symptoms of pulmonary fibrosis, what actions can be taken when symptoms develop, and how people living with pulmonary fibrosis can find hope and community post-diagnosis. If you have any medical questions or experience any symptoms we encourage you to address those with your doctor or licensed healthcare professional.

In the first episode of season two, we meet a new, exceptional group of guests made up of people living with various pulmonary fibrosis conditions, care partners and specialized doctors. In this episode we explore the first signs and symptoms of pulmonary fibrosis. These changes are often gradual and not always instantly noticeable. The symptoms can also often be confused with other conditions. Given these issues that patients face, we discuss how they can advocate for themselves.

In the final episode of season one, we are joined by Kristin who was a competitive swimmer until she was diagnosed with Sjogren’s syndrome and later progressive fibrosis, a rare lung condition. Listen to her explain how she adapted her routine to continue pursuing her passions and the importance of taking each day as it comes.