The Muscular Dystrophy Center at Johns Hopkins has a dedicated time reserved to work with adults with Duchenne Muscular Dystrophy (DMD) and the specific needs of this growing patient population. Most patients in this clinic have been diagnosed with DMD as children. They are living full lives with common symptoms of profound weakness of voluntary muscles as well as weakness of heart muscle and the muscles that control breathing. Other important symptoms that may be present include gastrointestinal problems, such as constipation, psychological aspects of the disease, such as depression, as well as sexual dissatisfaction and pain.
During this reserved clinic time, a neurologist oversees the overall care of the patient, directing evaluation and consultation by a variety of services. Each adult Duchenne patient is evaluated on the same day by a cardiologist and pulmonologist who have extensive experience in treating the specific heart and respiratory issues facing adults with DMD. In addition, a physical therapist and occupational therapist are on hand to address issues such as equipment needs, and Muscular Dystrophy Association liaisons are available to help resolve social, financial or other issues. Our genetics counselor is also available to discuss questions that the patient or family regarding the inheritance of the disorder. Mothers of patients with DMD are particularly welcome in these discussions as women who carry the gene for DMD frequently have health issues of their own related to the disorder. This multidisciplinary approach is not only more convenient to the patient who may have difficulties with transportation, but improves medical care as all the participating health care providers are located in the same clinic and can confer with each other about the best medical plan.