Duchenne Muscular Dystrophy Care Considerations

Learn about the latest in clinical care considerations for Duchenne muscular dystrophy.

If my son with Duchenne has to go the emergency room, will the doctor know how to treat him?

Is my son getting all the regular medical tests he needs?

How will my son learn to manage his own care and be independent when he’s older?

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.

Recent advances in medicine and science offer more options for people with DMD to improve their quality of life and live longer. The CDC’s National Center on Birth Defects and Developmental Disabilities funded the update of the existing DMD care considerations to benefit people with DMD, their families, and their caregivers.

These articles outline the latest in clinical care to help families and healthcare professionals manage and deliver the most current care for individuals with this complex medical condition. They provide care considerations for many medical specialties and are intended to raise the standard of care received. They may also help people with DMD and their families address some of the challenges they face.

The following medical specialties are included in the updated care considerations for DMD:

New DMD Care Specialties

Endocrinology (hormones and their function)
Bone heal
Primary care
Emergency care
Transition from adolescence to adulthood

Updated or Affirmed DMD Care Specialties

Diagnosis
Neurology (the brain and nerves)
Rehabilitation
Gastrointestinal (the digestive tract) care and nutritional management
Pulmonary (the lungs and breathing)
Cardiology (the heart and it’s function)
Orthopedic (bone and joint) care and surgical management
Psychosocial (mental health) care

The current articles update the 2010 Duchenne care considerations, also funded by CDC, and published by Lancet Neurology.

What You Can Do

If you’re concerned about the physical development of your child or a child you know, use the free online tool, Physical Developmental Delays: What to look for , to help determine if you should consult with your child’s doctor.

If your child has been diagnosed with DMD, learn more about care considerations and the resources available to ensure that your child is receiving the best clinical care.

Child Muscle Weakness is a free online tool designed to help clinicians, therapists, and other specialists diagnose muscle weakness in children as early as possible. Early diagnosis could lead to more personalized care for each person living with muscular dystrophy and may give each of them a better chance to reach his or her full potential.