source: Muscular Dystrophy Association (MDA), Parent Project Muscular Dystrophy(PPMD), TREAT-NMD, World Duchenne Organization
This Family Guide will provide you with basic information to allow you to participate effectively in the process of obtaining comprehensive care. Your NMS must be aware of all potential issues in Duchenne and must have access to the interventions that are the foundations for appropriate care and input from essential subspecialties. As you age, the emphasis of some interventions, as well as the inclusion of some subspecialists, will change. The Family Guide takes you through the different areas of Duchenne care. Not all of these subspecialists will be needed at all ages or stages, but it is important that they are accessible if necessary and that the person coordinating care has support in all these areas.
You are at the center of your care team – it is important that you and your family are actively engaged with a medical professional who will coordinate and individualize your clinical care.