How to Use this Guide
YOU CAN USE THIS GUIDE IN TWO DIFFERENT WAYS:
- To concentrate on a specific stage of Duchenne
- To concentrate on a specific area of Duchenne care
This next section, including Table 1, demonstrates the progression of Duchenne as a step-by-step process that varies from person to person. This guide is meant to be an overview of what care needs you might anticipate.
Additionally, if you want to read specific care-management sections that may be relevant to you now, you can find them easily using the menu on the left.
PUTTING TOGETHER YOUR CARE TEAM
The best management of Duchenne requires a multidisciplinary approach, with the input of specialists in many different areas that will provide your comprehensive care. A neuromuscular specialist (NMS) will act as the lead clinician of your neuromuscular team, taking responsibility for your overall care across your lifetime. As you move from paediatric to adult care, this specialist may change from a paediatric NMS to an adult NMS, but will remain the lead clinician for your team. A care coordinator or care advisor is an important member of the team who will help to make sure that communication and care is coordinated between team members, between you and the team, and between your neuromuscular team and your local/primary care providers (paediatrician, family practice provider, etc.). If your neuromuscular team does not include a care coordinator or care advisor, be sure to ask who you should call for questions/concerns/emergencies between appointments.
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 (Figure 1). Not all of these sub-specialists 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 individualise your clinical care (Figure 1).
TAKING DUCHENNE STEP-BY-STEP (TABLE 1)
Duchenne is a condition that changes very slowly over time. We have separated key stages of Duchenne to help you anticipate recommendations for care. Although these stages can be somewhat blurred in distinction, you may find it useful to use the stages to identify the kind of care and interventions that are recommended at any particular time and what you should expect of your care team at that time.