Breathe journal June 2019 – ‘Living well with a Chronic Respiratory Disease’
The current issue of the European Respiratory Society’s journal, Breathe, focuses on living well with a chronic respiratory disease, and includes an article from an ABPA patient. Links to this patient voice article, and other pieces which may be of interest to aspergillosis patients are highlighted below.
Chief Editor, Claudia Dobler, introduces this issue in a short editorial. This covers a number of the burdens that lung disease patients can face, and the various ways in which they can achieve well-being and adjust to their circumstances in the face of chronic illness.
Mike Chapman shares his experiences of living with ABPA and other respiratory problems. Many aspergillosis patients will identify with his experience of a lengthy and difficult journey to diagnosis, and trying to remain positive, despite debilitating health conditions.
This article covers the growing interest in using music and dance as part of a holistic approach to managing chronic lung disease. Several recent studies have focused on the benefits that music and dance have on the physical, mental and social health of those with chronic lung disease; this piece goes over some of this research, and the key gaps that are missing.
Anxiety and depression are common in people with chronic obstructive pulmonary disease and, as well as being major problems themselves, can interact with and worsen physical symptoms. This article again focuses on the holistic treatment of the patient, and suggests how we can incorporate CBT into routine care for those with COPD.
Where are the gaps in education in the field of rare lung disease? Perspectives from the ERN-LUNG educational programme survey
ERN-LUNG (the respiratory-focused European reference network) recently sent a survey out to healthcare professionals and patients to find out the gaps in rare lung disease education in Europe. From a patient’s perspective, a large majority thought that there was a need for patient education at a European level, but only just over a 3rd were aware of existing resources. 95% thought that patients had a role to play in the education of professionals. Read the article to see the key conclusions from the survey.