After the diagnosis is confirmed by a NMS, information and resources should be sent to your PCP about Duchenne. PCPs are typically those multidisciplinary teams, general practitioners or nurse practitioners who specialise in paediatrics, general practice, family medicine, or internal medicine and provide your “medical home.” An ongoing medical relationship with your PCP will provide a continued, much-needed source and stability and support.

Your PCP’s responsibilities should include:

• First-line care for acute and chronic medical issues
• Age/developmentally appropriate care at all stages of development
• Coordination of care with appropriate specialists
• Annual screening for hearing and vision
• Annual screening for mood disorders, substance abuse, and other mental health problems
• Ensure all vaccinations are up to date, including annual influenza vaccinations (the flu injection should be given, rather than the live virus nasal vaccine)
• Annual screening for cardiovascular risk factors, such as high blood pressure (hypertension) and high cholesterol levels (hypercholesterolemia).