People with Duchenne typically do not have trouble breathing or coughing while they are still walking. Later on, the muscles that support breathing may weaken as well, and people with DMD may develop problems with breathing during sleep and, as they get older, they may need help with breathing during the day as well. It is extremely important to use devices to make their cough more effective. A planned and proactive approach to respiratory care is necessary and should be based around close monitoring, prevention of problems, and early intervention when indicated.
For this reason, respiratory issues can have a big impact on the quality of life of people with DMD. This is the reason why the program “Breathe your story” aims to highlight this connection between respiratory management and daily life and quality of life for people with DMD using storytelling and educational materials.
This program is supported by Santhera.