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Receiving a DMD diagnosis is difficult, but you are not alone. There is an extensive care team available to DMD patients, and they will be able to offer information and support as you need it, so please reach out to them.
Your DMD care team may include the following:
Trained to navigate the healthcare system, these advisors provide social, psychological, emotional, and practical support for patients and families with DMD. They also provide guidance on services, equipment, and funding.
Mental health specialists who help families adjust to a DMD diagnosi, putting them in touch with services they might need and working with schools to make sure they have the right equipment and systems in place.
Trained in medical genetics, the genetic counselor can explain the various genetic tests available, their results, and help you make decisions about your own health based on what genetic testing reveals.
Highly trained in how food impacts health, a dietician provides nutritional therapy and/or advice to patients and their families.
A doctor who specializes in conditions that affect the brain, spinal cord, and nerves. This doctor is often in charge of the patient—directing and coordinating care for a person with DMD.
Specially trained in how muscles and bones connect with each other and work together, the physical therapist works with patients to improve muscle and joint function.
Specially trained in how muscles and bones connect with each other and work together, the physical therapist works with patients to improve muscle and joint function.
A doctor who specializes in bone and joint disorders.
A doctor who specializes in diseases of the heart and blood vessels.
A doctor who specializes in diseases of the lungs
A nurse who specializes in providing care for patients with DMD.
Adapted from Birnkrant et al. 2018,1 Birnkrant et al. 20182 and Muscular Dystrophy UK3
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Date of preparation: September 2022
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Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.
Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.
Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.
Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.
Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.
Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.
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