The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with Duchenne will have pulmonary issues of some type.
The goal of pulmonary care is to allow both the prevention and management of respiratory complications. This is such an important area of care and concern that we pulled together pulmonary experts from across the US to address important issues. Some of these issues, depending on the age of the person living with Duchenne, may include:
Because there are so many questions about pulmonary issues, we thought we would pull together some of the top US experts in Duchenne pulmonary care and ask them for answers! PPMD will present a three part series on the pulmonary care of patients living with Duchenne this fall. The schedule and some of the topics are below:
Topics: staying healthy, the importance of immunizations, when to begin spirometery, what should spirometery include, when to start to use a cough assist, pulmonary considerations in emergency care, safe/unsafe anesthesia, the issue with oxygen, preserving pulmonary expansion
Topics: the importance of spirometery/cough peak flow, using a cough assist, night-time hypoventilation/sleep studies, measuring oxygenation, the effects of scoliosis on breathing, traveling with pulmonary assist devices, preventing pneumonia
Topics: daytime hypoventilation, non-invasive and invasive ventilation, disaster preparedness, advocacy, planning for transfer from pediatric to adult care, swallowing and speech difficulties, managing increased secreations
Each webinar will be 50 minutes long with 10 minutes for questions. All of the webinars will be summarized at the end, and new information will be used to update the PPMD Care Information and shared with the CDC for their use in the updating of the Care Considerations.
We hope you will listen in and get the answers to some of these very important questions.
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