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Finding and Choosing a Duchenne Care Center
Expert, multidisciplinary care improves outcomes in Duchenne. How to find a specialist center, what good care looks like, and when to seek a second opinion.
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#standards
All articles and blog posts tagged #standards.
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Heart Medications in Duchenne: Protecting the Heart Before Symptoms
The heart needs protecting in Duchenne, often before symptoms. How medicines like ACE inhibitors and beta blockers help, when they start, and why early matters.
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Making Informed Decisions Together With Your Duchenne Care Team
Duchenne care involves many decisions. How to become an informed partner, understand the options and trade-offs, and share decisions well with the care team.
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Steroid Dosing Schedules in Duchenne: Daily and Intermittent
Steroids in Duchenne can be given on different schedules, from daily to intermittent. How the regimens compare, the evidence, and how the choice is made.
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Gastrointestinal Problems in Duchenne: Reflux, Slow Digestion, and Gut Comfort
Duchenne can affect the gut as well as the limbs. Reflux, slow stomach emptying, bloating, and constipation: why they happen, and how to keep the gut comfortable.
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Lung Function Tests in Duchenne: Spirometry, FVC, and Cough Strength
Lung function tests track breathing strength in Duchenne. What spirometry, FVC, and peak cough flow measure, what the numbers mean, and when they guide support.
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Orthoses, Splints, and Standing Programs in Duchenne
Orthoses, night splints, and standing programs help manage contractures and posture in Duchenne. What each does, when they are used, and how they fit into care.
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Deflazacort vs Prednisone: Choosing a Steroid in Duchenne
Prednisone and deflazacort are the two main steroids for Duchenne. How they compare on benefits and side effects, and how families and teams choose between them.
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Eye Care and Cataract Monitoring on Long-Term Steroids in Duchenne
Long-term steroids in Duchenne raise the risk of cataracts. Why eye monitoring is part of steroid care, what symptoms to watch for, and how often to check.
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Skin and Pressure Care for Wheelchair Users With Duchenne
Once a child with Duchenne uses a wheelchair full time, skin and pressure care matter. Why pressure injuries happen, how to prevent them, and what to watch for.
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Gastrostomy and Tube Feeding Decisions in Duchenne Muscular Dystrophy
When eating becomes hard in Duchenne, a gastrostomy can protect nutrition and weight. What tube feeding is, when it is considered, and what the decision involves.
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Fatigue and Energy Conservation in Duchenne Muscular Dystrophy
Fatigue in Duchenne: why children tire more easily, how it affects school and daily life, and energy-conservation strategies that help them do more.
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Organizing Medical Information: A Care Binder for Duchenne Families
Organizing a child's Duchenne medical information: what to keep in a care binder, why it helps across a multidisciplinary team, and how to keep it current.
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Airway Clearance and Cough Assist in Duchenne Muscular Dystrophy
Airway clearance in Duchenne: why a weak cough raises infection risk, how assisted coughing and cough-assist machines help, and when families bring them in.
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Hand and Upper-Limb Function in Duchenne Muscular Dystrophy
Hand and upper-limb function in Duchenne: how arm and hand strength change over time, why it matters for independence, and how therapy and adaptations help.
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Losing Ambulation: What Changes When a Child With Duchenne Stops Walking
When a child with Duchenne stops walking, care shifts: why it happens, what to expect, and how scoliosis, cardiac, and respiratory monitoring intensify.
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Muscle MRI in Duchenne Muscular Dystrophy
Muscle MRI in DMD: fat fraction, T2 mapping, Mercuri grading. How imaging biomarkers track disease beyond cardiac and what they add to functional tests.
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Patient Registries and Natural History Studies in DMD
DMD patient registries: CINRG, Duchenne Registry, TREAT-NMD, MD STARnet. What they do, who can join, and why enrollment supports the whole community.
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Telemedicine and Remote Care in Duchenne Muscular Dystrophy
Telemedicine in DMD: when virtual visits work, what they cannot replace, and how families can prepare to get the most from a remote appointment.
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Cardiac MRI in Duchenne Muscular Dystrophy
Cardiac MRI in DMD: late gadolinium enhancement, early fibrosis detection, when it is used, and why it changes the cardiac surveillance plan.
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Functional Assessments in Duchenne Muscular Dystrophy
Functional assessments in DMD: 6MWT, NSAA, time-to-stand, PUL. What each measures, why they matter for trials and routine care.
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Vaccinations in Duchenne Muscular Dystrophy
Vaccinations in DMD: influenza, pneumococcal, COVID-19, why respiratory protection matters more, and what to discuss with the care team.
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Adult Care in Duchenne Muscular Dystrophy
Adult care in DMD: ongoing cardiac, respiratory, endocrine, and rehab needs for patients living into their 20s, 30s, and beyond.
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Endocrine Care in Duchenne Muscular Dystrophy
Endocrine care in DMD: growth, puberty, adrenal suppression, and why patients on long-term corticosteroids need an endocrinologist on the team.
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The DMD Care Team: Who Does What
A practical guide to the multidisciplinary DMD care team: neuromuscular, cardiac, pulmonary, rehab, endocrine, psychosocial, and how they coordinate.
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Speech and Language Therapy in Duchenne Muscular Dystrophy
Speech-language therapy in DMD: dysphagia assessment, voice preservation, communication strategies, and when to start working with an SLP.
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Bowel and Bladder Care in Duchenne Muscular Dystrophy
Bowel and bladder dysfunction in DMD: prevalence, why it happens, practical management, and when to escalate.
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Sleep in Duchenne Muscular Dystrophy
Sleep in DMD: why night breathing changes first, polysomnography, what overnight oximetry misses, and when to start ventilation.
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Pain Management in Duchenne Muscular Dystrophy
Chronic pain in DMD is common, under-recognized, and treatable. A practical overview for families and care teams.
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Scoliosis in Duchenne Muscular Dystrophy
Scoliosis in DMD: why curves develop, what surveillance involves, when surgery is considered, and what families can ask the team.
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Nutrition in Duchenne Muscular Dystrophy
Nutrition in DMD: weight management on steroids, bone-supporting nutrients, constipation, swallowing changes, and when to involve a dietitian.
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Anesthesia Safety in Duchenne Muscular Dystrophy
Anesthesia in DMD requires specific precautions: succinylcholine is contraindicated, volatile agents are avoided, and pre-op cardiac and respiratory assessment is essential.
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Physical Therapy in Duchenne Muscular Dystrophy
Physical therapy in DMD: stretching, contracture prevention, what activities help, and which to avoid. A practical guide for families.
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Bone Health in Duchenne Muscular Dystrophy
Bone health in Duchenne muscular dystrophy: fracture risk, DEXA scans, vitamin D, calcium, and what families and clinicians can do.
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Respiratory Care in Duchenne Muscular Dystrophy
Respiratory care in Duchenne muscular dystrophy: lung function decline, sleep-disordered breathing, non-invasive ventilation, cough assist, and surveillance.
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DMD Standards of Care: What Good Care Includes
Dmd standards of care include coordinated neuromuscular, heart, lung, rehab, bone, nutrition, and psychosocial support.