Explore Care by Area

Care guidelines for people living with Duchenne have been developed across the lifespan, from early childhood to adulthood. Caring for Duchenne requires a comprehensive, multidisciplinary approach. Included in each topic below is a description of the care needed for that area.

Important Links

• Emergency Care
• Surgery & Anesthesia

Care for Muscles

Because people with Duchenne do not have dystrophin (a protein found in muscle), their skeletal muscles gradually become weak. Though the muscle weakness in Duchenne follows a predictable path, every person’s timeline is slightly different. Your neuromuscular and rehabilitation specialists will help keep track of the strength of your muscles, as well has help you to maintain your strength, function, and flexibility.

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Care for Muscles

Vaccination Recommendations

Following recommended vaccination schedules is important for staying healthy and avoiding potentially harmful illnesses. It is important to speak with both your primary care provider and your neuromuscular care team about vaccinations — some changes may be necessary for people living with Duchenne. This is especially important for those planning to start or continue  steroid (corticosteroid) therapy.

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Vaccination Recommendations

Steroids, Medications, & Supplements

Steroids

A type of steroid called “corticosteroids” are used in Duchenne to slow down muscle damage and weakness in Duchenne. Your neuromuscular specialist will oversee the initiation and management of this therapy.

Other Supplements & Medications

Medications are prescribed by a medical provider and are approved by the FDA. Supplements are compounds that have not been approved by the FDA. This section describes some of the medications taken and some of the supplements used by people living with Duchenne.

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Other Supplements & Medications

Emergency Care

If your child suddenly becomes sick or injured, it is extremely important that you have the following information with you when talking to the emergency staff, including surgery, anesthesia, and oxygen use precautions.

Care for the GI System & Nutrition

Maintaining a healthy, well-balanced diet and weight is important to optimize your health. Duchenne may also affect the muscles used to chew and swallow, and should be evaluated by your neuromuscular care team regularly.

Care for the Heart

The heart is a muscle too, and just like the skeletal muscles, it is also affected by Duchenne. People living with Duchenne should visit a cardiologist starting at diagnosis, then at least annually, to screen for and manage any heart problems. Carriers of Duchenne are also at risk for developing heart issues and should be followed by a cardiologist at least every 3-5 years, if function is normal.

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Care for the Heart

Care for Lung Muscles

In Duchenne, the muscles responsible for breathing and coughing weaken over time. It is important to visit a lung doctor (pulmonologist) at least annually so they can monitor the strength of your breathing and coughing closely, help keep your lungs healthy, and avoid illness.

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Care for Lung Muscles

Bone & Joint Care

People with Duchenne, especially those taking steroids, have weak bones (osteoporosis), putting them at risk for fractures. Contractures (when joints lock) and scoliosis (when the spine begins to curve) are both orthopedic problems that may happen in Duchenne, and require prompt referral to an orthopedic specialist.

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Bone & Joint Care

Physical Therapy

Physical therapy will be an extremely important aspect of your rehabilitation care, starting at the  time of diagnosis. In Duchenne, the goal of physical therapy is to preserve flexibility, strength, and function of your skeletal muscles.

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Physical Therapy

Growth & Puberty

Steroid (corticosteroid) regimens may result in hormone imbalances. The two most common hormone problems in Duchenne include testosterone deficiency, affecting pubertal development, and growth hormone deficiency, affecting growth or stature (height). Referral to an endocrinologist, or hormone specialist, may be advised if you have delayed pubertal development or short stature.

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Growth & Puberty

Learning & Behavior

At least annually, it is important for you to be screened for any concerns related to your mental health. More specifically, it is important to discuss learning, behavior, social interactions, and emotional adjustment with a member of your neuromuscular care team. Mental health is just as important as physical health and should not be overlooked.

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Learning & Behavior

Pain Management

It is always important to notify your neuromuscular care team about any pain you may be having. They can assess the source of the pain and help to connect you to the proper resources to resolve your pain.

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Pain Management

Dental Considerations

Dental hygiene and proper care are extremely important and help to reduce the incidence of oral and respiratory infections, specifically pneumonia. Dentistry generally can and should be performed with minimal or no anesthesia to provide the patient with maximal physical and emotional comfort.

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Dental Considerations

Occupational Therapy, Mobility & Accessibility

Being able to get from place to place is important for everyone. Mobility comes in many forms—strollers, walking (unassisted or with braces), electric scooters, manual or electric wheelchairs, and more. For people living with Duchenne, these assistive devices provide a sense of independence, the ability to keep up with peers, and take away the fear of falling.