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Introduction
How to Use this Guide
Disease Stages
Diagnosis (infancy/childhood)
Early Ambulatory (childhood)
Late Ambulatory (late childhood/adolescent/young adult)
Early Non-Ambulatory (childhood/adolescent/young adult)
Late Non-Ambulatory (young adult/adult)
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Diagnosis
Care at Diagnosis
When to Suspect DMD
Role of the Primary Care Provider (PCP) in the Care Team
What Causes Duchenne?
Confirming the Diagnosis
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Neuromuscular Management
Neuromuscular Management Overview
Neuromuscular Assessments
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Steroid Management
Steroid Management Overview
The Different Steroid Dosing Regimens
Steroid Dosing, Management, and Side Effects
Adrenal Insufficiency and Crisis
Other Drugs and Dietary Supplements
Steroid Side Effects: Recommended Monitoring and Intervention
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Endocrine Management
Endocrine Management Overview
Growth and Puberty
Growth Hormone Therapy
Testosterone Therapy
Adrenal Crisis
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Bone Health (Osteoporosis) Management
Orthopaedic Management
Orthopedic Management Overview
Contractures
Scoliosis
Long Bone Fractures
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Rehabilitation Management
Rehabilitation Management Overview
Range of Motion, Exercise, and Stretching
Wheelchairs, Seating, and Other Adaptive Equipment
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Pulmonary Management
Pulmonary Management Overview
Surveillance & Prevention
Interventions
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Cardiac Management
Cardiac Management Overview
Surveillance
Treatment
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Gastrointestinal Management
Gastrointestinal Management Overview
Nutritional Management
Swallowing Management
Symptoms of Dysphagia
Dysphagia Interventions
Constipation and Gastroesophageal Reflux Disease (GERD)
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Psychosocial Management
Psychosocial Management Overview
Assessments
Care & Support Interventions
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Considerations for Surgery
Emergency Care Considerations
Transition of Care
Transition of Care Overview
Timing of Transition Planning
Care Coordination
Health Care
Education, Employment and Pursuit of Vocations
Housing and Assistance with Activities of Daily Living
Transportation
Personal Relationships
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Country Specific Information