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Duchenne Muscular Dystrophy

​Muscular dystrophies are a group of genetic disorders that result in a specific pattern of muscle weakness over time. Each type of muscular dystrophy is different from the others. It is important to get help as early as possible. Muscular dystrophy has no cure but acting early may help an individual with muscular dystrophy get the services and treatments he or she needs to lead a full life.

There are many kinds of muscular dystrophy, each affecting specific muscle groups, with signs and symptoms appearing at different ages, and varying in severity. Duchenne muscular dystrophy (DMD) is the most common. It is marked by symptoms that develop usually before age 5 years, and can affect many parts of the body, including the heart and lungs.

The past decade has seen tremendous advances in the diagnosis and treatment for boys and men with DMD, with life expectancy improving from mid-teens to mid-twenties with the use of glucocorticoids, and beyond the third decade with ventilator support and multidisciplinary care.

Policy Statements and Clinical Reports

Education Series

The webinars in this 5-part education series focus on primary and specialty care for patients with Duchenne muscular dystrophy (DMD). Through this education series, pediatricians will be better informed about emerging therapies related to the care and management of patients with DMD. Further, they will be able to identify common issues affecting children with DMD. Finally, emphasis is placed on the valuable role of both primary care medical home and sub-specialty providers in coordinating effective treatment for patients with DMD.

Webinar 1: Duchenne Muscular Dystrophy: Diagnosis, Primary Care and Emergency Room Care

Webinar 2: Duchenne Muscular Dystrophy: Diagnosis, Neuromuscular, Rehabilitation, Orthopaedic, and Surgical Management (the muscle webinar)

Webinar 3: Duchenne Muscular Dystrophy: Bone Health, Endocrine, gastrointestinal and nutritional management (the growth webinar)

Webinar 4: Duchenne Muscular Dystrophy: Respiratory and Cardiac

Webinar 5: Duchenne Muscular Dystrophy: Psychosocial and Transitions

Tools and Resources for Pediatricians

  • Pediatric Care Online: Muscular Dystrophy
    Quick access to multiple resources, all in one integrated online library and , for current clinical information needed at the point-of-care. Subscription Required.

  • Specialty Care for the Patient with Duchenne Muscular Dystrophy (Pediatrics, October 2018)
    The discipline specific articles in this supplement aim to raise the standard of care and improve quality of life for those living with the condition. Specialty areas range from cardiology to osteopathic care and nutrition to psychosocial considerations for patients with Duchenne muscular dystrophy.

  • Diagnosis and Management of Duchenne Muscular Dystrophy Parts 1, 2 and 3 (Lancet Neurology, January 2018)
    The updated care considerations for DMD are contained in a set of three articles published in Lancet Neurology.  They offer the latest clinical considerations to improve care and quality of life for people living with DMD. These care considerations, funded by the Centers for Disease Control and Prevention (CDC), are intended to raise the standards of care, help clinicians provide the best possible care to people with DMD, and give families and caregivers the necessary information to manage their care.

  • Child Muscle Weakness
    Learn the steps to identify pediatric muscle weakness and signs of neuromuscular disease. This resource is a product of a national task force led by Parent Project Muscular Dystrophy (PPMD).

  • Muscular Dystrophy Association
    Explore the MDA Care Center Network and find a location near you.

  • Muscular Dystrophy Research and Tracking
    The Centers for Disease Control and Prevention (CDC) funds the Muscular Dystrophy Surveillance, Tracking, and Research Network, known as MD STARnet. MD STARnet collects critical information about muscular dystrophy that will improve care for those living with the disease.

Tools and Resources for Patients and Families

Does My Child Have Physical Developmental Delays?
Patients and Families can use this tool to learn more about physical developmental delays for children ages 5 and under, and it can serve as a starting point for conversations with their child’s pediatrician.