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. Join us as we travel through their journeys, we hear heart-warming stories of determination, resilience and the importance of using these experiences to truly live life to the full.
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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. Join us as we travel through their 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: Childhood interstitial lung disease (chILD)
Journeys through pulmonary fibrosis
36 minutes
3 years ago
Special episode: Childhood interstitial lung disease (chILD)
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.
Journeys through pulmonary fibrosis
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. Join us as we travel through their journeys, we hear heart-warming stories of determination, resilience and the importance of using these experiences to truly live life to the full.
