Learn The BasicsDuchenne muscular dystrophy (DMD) is a rare, genetic, multi-system disease that mainly affects the striated muscles. It can also have a negative effect on the heart and skeletal system. Patients, therefore, need to be followed by a multi-disciplinary care team comprised of a neuromuscular specialist, cardiologist, pulmonologist and orthopedist.
Patients may also need to see an endocrinologist, nutritionist, gastroenterologist, physiotherapist, occupational therapist, speech therapist and psychologist or psychiatrist.
Neuromuscular specialist
The neuromuscular specialist is the leader of the multidisciplinary care team. They manage the problems associated with musculature and the skeletal system. It is important that the neuromuscular specialist is aware of the potential problems specifically associated with DMD.
Cardiologist
The cardiologist, or heart specialist, monitors signs of heart failure and prescribes heart medication as and when needed. The aim is to slow the onset and progression of cardiac complications.
Pulmonologist
A pulmonologist is a lung specialist who should evaluate breathing and coughing in patients with DMD.
They may perform lung function tests and sleep studies and recommend care to prevent respiratory complications and treat these if they occur.
Orthopedist and orthopedic surgeon
The orthopedist can offer information about bone and joint care and avoid fractures. They should monitor bone health and recommend treatments, especially in patients who have been on long-term corticosteroid treatment.
The orthopedic surgeon can perform surgery to relieve contractures and correct scoliosis, the sideway curvature of the spine that occurs due to weakness in the muscles supporting the spine.
Endocrinologist
The use of corticosteroids, which is the first-line treatment for DMD, can negatively affect the endocrine or hormonal system. Patients should, therefore, have an endocrinologist in their care team to manage problems associated with hormones.
Nutritionist
Patients with DMD often also have obesity and may experience malnutrition due to swallowing difficulties as the muscles of the neck and throat weaken.
A nutritionist can help evaluate the patient’s diet and nutritional status and make recommendations about a healthy diet plan.
Gastroenterologist
Many patients with DMD experience gastrointestinal issues such as severe constipation, likely due to the loss of muscle mass and activity. A gastroenterologist can help monitor and treat these issues in patients with DMD.
Physiotherapist, Occupational Therapist and Speech Therapist
A physiotherapist can prescribe and guide exercises to decrease muscle stiffness and increase muscle stretch.
An occupational therapist can make changes to patients’ daily activities or environments to ensure they are suitable for their abilities. They can also provide guidance about specialized equipment and aids such as splints and wheelchairs.
A speech therapist can prescribe exercises to improve speech and articulation as the disease progresses and affects the muscles that are involved in speech. They may also suggest speech amplification devices and compensatory approaches to improve speech.
Psychologist and Psychiatrist
DMD may also affect mental health and be associated with learning and behavioral difficulties. Patients may need to see a psychologist or a psychiatrist to identify mental health issues and offer treatment as needed. Integrating psychosocial management into the multidisciplinary management of DMD is now standard practice.