“Families who care for people with Duchenne muscular dystrophy (DMD) face questions like these every day. DMD is a form of muscular dystrophy, a rare genetic (inherited) disease with muscle weakness that gets worse over time and ultimately affects the heart and lungs. Living with DMD provides challenges for families and caregivers: Activities of daily living (for example, getting dressed or eating on your own) can be challenging. Care for a person with DMD involves different kinds of doctors, which makes coordinating care difficult. The quality and type of care that patients with DMD receive may vary from one treatment facility to another.”
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