If you were able to listen to the third recording of the pulmonary webinar series (Adult Duchenne Pulmonary Care), you heard Dr. Sheehan mention the publication of a new booklet, “Ventilation and Duchenne” (PDF download) by the DMD Pathfinders. DMD Pathfinders is a group of young adults and adults living with Duchenne, whose goal is the promotion of choice and control and quality of life for teenagers and adults with Duchenne in the UK. Recently, data regarding pulmonary care and management was gathered from 300 members of the DMD Pathfinders, indicating huge variations in care. This booklet is a resource to answer common pulmonary questions and concerns, and should be used in conjunction with formal medical advice.
This booklet is an excellent resource for the different options for ventilatory assistance, the risks and benefits of non-invasive and invasive ventilation, staying healthy, handling emergencies, and other very important topics. We applaud the efforts of this group to being the international Duchenne community this very important information. Great job Pathfinders!