‍Duchenne Care UK Audio Care Guides

This episode explores how Duchenne muscular dystrophy affects breathing and why respiratory monitoring is such an important part of long-term care. Learn why the lungs themselves remain healthy while the muscles that support breathing gradually weaken, and how regular respiratory assessments can identify changes before symptoms become obvious. The episode covers lung function testing, cough strength, sleep-disordered breathing, chest infections, scoliosis, sleep studies, and the early signs families should look out for, including morning headaches, daytime tiredness, and disrupted sleep. Practical, reassuring, and family-focused, it explains how proactive monitoring and timely support can make a significant difference to quality of life.

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This episode explores why fractures and orthopaedic emergencies in Duchenne muscular dystrophy require specialist care and rapid decision-making. Learn why a broken bone can involve much more than the injury itself, including adrenal crisis risk, steroid stress dosing, fat embolism syndrome, anaesthetic considerations, pain management, and the importance of early specialist input. The episode also covers long-term orthopaedic care, including contractures, stretching programmes, orthotics, physiotherapy, and preserving mobility and independence. Practical, informative, and family-focused, it highlights the steps families and healthcare teams can take to prepare for emergencies and protect function over time.

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This episode explores the critical information families and healthcare professionals need when someone with Duchenne muscular dystrophy requires emergency care. Learn about the Duchenne-specific considerations that may not be familiar to emergency teams, including adrenal crisis and steroid management, respiratory complications, oxygen use, anaesthesia risks and medicines that should not be used, cardiac concerns, the risk of fat embolism syndrome, pain management, and communication needs. The episode also highlights the importance of emergency planning, the Duchenne UK Connect app, and Shiv’s Recommendations, helping families ensure that vital information is available when every minute matters. Practical, reassuring, and action-focused, it explains how preparation can support safer, more informed emergency care.

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This episode explores how Duchenne muscular dystrophy affects education, learning, and school life beyond physical accessibility. Discover why effective support involves more than ramps and lifts, covering cognitive, social, emotional, and communication needs as well as physical adaptations. The episode discusses support at school including the importance of Education, Health and Care Plans (EHCPs), learning differences, attention and anxiety, school inclusion, the impact of corticosteroids, transition to secondary school, friendships, independence, and preparing schools to support children and young people with Duchenne to thrive. Practical and family-focused, it highlights the importance of early planning, joined-up support, and recognising the needs that are often less visible.

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This episode explores the role of corticosteroids in Duchenne muscular dystrophy and why they remain the cornerstone of care. Learn how treatments such as prednisolone, deflazacort, and vamorolone can help slow muscle decline, preserve mobility, and support heart health and breathing. The episode also explains the importance of ongoing monitoring and management of the side effects of long-term steroid treatment, covering growth, weight management, bone health, puberty, adrenal insufficiency, blood pressure, and other potential side effects. Practical, balanced, and family-focused, it offers valuable insight into both the benefits of treatment and the care needed to manage it safely over time.

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This episode explores why heart monitoring is a vital part of Duchenne care, even when a child appears completely well. Learn how Duchenne muscular dystrophy affects the heart muscle over time, why regular cardiac screening starts in childhood, and how early treatment can help protect heart function before symptoms develop. The episode covers ECGs, echocardiograms, cardiac MRI, heart rhythm monitoring, blood pressure management, and the medications commonly used to support heart health and how and when these should be introduced. Clear, practical, and family-focused, it explains the importance of staying ahead of changes that may not be visible or felt.

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This episode explores the bone health issues associated with Duchenne muscular dystrophy. Explore topics including silent spinal fractures, bone density monitoring, vitamin D, the connection between bone health, hormones, puberty, and long-term steroid treatment in Duchenne, delayed puberty, fracture prevention, and the treatments and support available to families. Practical, accessible, and rooted in the Duchenne Care UK care guides, this episode helps families understand the importance of proactive monitoring and what to watch for as children grow.

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