The Journeys through pulmonary fibrosis Homepage
Being diagnosed with a rare disease can often leave people with more questions than answers. This is especially true for those living with the rare lung condition, pulmonary fibrosis. In an effort to build and give a voice to this courageous community, we bring you ‘Journeys through pulmonary fibrosis’ – a podcast series aimed at bringing together the inspirational people living with this condition, their carers, and the researchers and doctors working tirelessly to support them. As we travel through their patient journeys, we hear heart-warming stories of determination, resilience and the importance of using these experiences to truly live life to the full.
Special episode: The scleroderma conversation
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.
Season 2
Episode 7
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.
Episode 6
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.
Episode 5
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.
Episode 4
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.
Episode 3
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 healthcare professionals on how to best to break the news.
Episode 2
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.
Special episode - 'shedding light on pulmonary fibrosis'
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.
Episode 1
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.
Season 1
Episode 6
In 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.
Episode 5
We are joined by John who spent a decade seeking a correct diagnosis of the rare lung disease, Idiopathic Pulmonary Fibrosis. Listen to him explain the importance of sharing symptoms with your doctor and how he considers his eventual diagnosis to be the beginning of a new journey.
Episode 4
We are joined by Andrew, who was diagnosed with scleroderma with interstitial lung disease. Listen to him speak about the importance of support throughout the patient journey and how he has been able to empower others within this unique community.
Episode 3
We are joined by Cheryl, who was diagnosed with a rare lung disease called sarcoidosis-associated interstitial lung disease. Listen to her speak about rediscovering many of her previous passions, and how, with the right attitude, her journey became one of growth and revival.
Episode 2
We are joined by Jim, who spent nearly three years seeking a correct diagnosis of a rare lung disease called RA-ILD (Rheumatoid Arthritis-Associated Interstitial Lung Disease). Listen to Jim discuss his father’s journey with the same condition and how Jim’s diagnosis changed his perspectives.
Special Episode
In a special episode on COVID-19 and the effect on the pulmonary fibrosis community, we are joined by Bill Vick, Founder of PF Warriors, and pulmonologist Dr. Leticia Kawano-Dourado. Listen to them share their experiences of the pandemic and discuss how those living with pulmonary fibrosis can best protect themselves during these uncertain times.
Episode 1
In the first episode of the series we are joined by special guest Dr Craig Conoscenti, medical expert in interstitial lung disease on the clinical development and medical affairs team at Boehringer Ingelheim. Listen to him discuss his experiences as both physician and caregiver to his own father, and the importance of creating a positive patient journey.