Once your child’s diagnosis is confirmed, he will be offered a number of treatments and supportive therapies aimed to help slow the progression of the disease, control symptoms and improve quality of life.
Common supportive therapies and treatments include:
Physical and speech therapy
Patients with Duchenne require ongoing physical and occupational therapy to manage symptoms and maintain muscle tone, strength and function. Physical therapists will play a major role in the care of patients with Duchenne to provide assessments and management of the progression of the disease. Often, speech therapy is needed as well. Read more.
As the disease progresses, a variety of assistive devices may be used to make the child more comfortable and aid in daily living. Assistive devices for mobility can include strollers, braces, manual or electric wheelchairs and more.These devices need to be adjusted to their growing bodies and changing needs. Read more.
Lung care and ventilation
Duchenne affects the muscles in the body, including those used for breathing. As the disease progresses, lung muscles will get weaker and eventually patients with Duchenne will have trouble breathing. For those patients whose breathing is affected, families will need to seek respiratory therapy. Read more.
Your child’s heart should be checked often. It’s important that cardiac management take place early to ensure early detection and treatment of the heart muscle function. Read more.
Diet, nutrition and swallowing
There are several gastrointestinal (GI) and nutritional issues children with Duchenne may have. Duchenne can affect or cause: constipation, gastroesophageal reflux, osteoporosis/fractures and problems chewing, swallowing and breathing. It is important to talk to a healthcare provider about a nutritional assessment and have regular check-ups to ensure that the patient is receiving a well-balanced diet and the right amount of nutrients, supplements and fluids. Read more.
Psychosocial or mental health including behavior, emotional adjustment, learning/school success and relationships are very important for overall well-being and quality of life. Addressing these needs for a person with Duchenne is an important element in their overall medical care. Those affected with Duchenne are more likely to have challenges with development, learning, behavior, social interactions and emotional adjustment than other people their age. There are many different interventions and treatment options that can help. Read more.
Steroids (also called glucocorticoids or corticosteroids) are used to slow the decline in muscle strength and motor function in Duchenne. Often the goal of steroid use is to help the child walk independently for longer and to later minimise breathing, heart and orthopaedic problems. Steroids can also reduce the risk of scoliosis (curvature of the spine). Read more.
Receiving the best care can improve the quality of life and life expectancy of individuals living with Duchene muscular dystrophy, enabling them to live life to the fullest.
The Diagnosis and Management of Duchenne Muscular Dystrophy is a comprehensive online guide for families that summaries the results of an international consensus on multidisciplinary care.
The three-year project, guided by the U.S. Centers for Disease Control with input from 84 leading Duchenne specialists worldwide, originally appeared as a two-part series in Lancet Neurology in 2010.* It was later converted as a family guide based by The Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the United Parent Project Muscular Dystrophy.
The guide contains a wealth of information, covering everything families need to understand from diagnosis, disease stages to emergency care. It can be used as an overview for families who want a full picture of the disease from the start, or as a step-by-step guide for those who prefer to concentrate on the stage of Duchenne their child has reached.
Click here to view the DMD Guide.
*To read the January 2010 and February 2010 printed editions of the Lancet Neurology, visit TREAT-NMD.