Patient Care Approach

Family-Centered Approach to Patient Care


As a first step, we discuss the onset and progression of symptoms, examine muscles and other organ systems, and review any previous testing. Our team may recommend a blood test or muscle biopsy. A genetic counselor guides patients through the diagnostic process. Once a diagnosis has been confirmed, we tailor a treatment plan to the needs of each patient. The team may provide medical management through the use of corticosteroids or other drugs, which need to be carefully monitored. In addition, patients receive an assessment and individualized rehabilitation treatment plan. The team also manages contractures (shortening of the muscle or tendon), scoliosis, and heart and lung function. Finally, to help ensure each patient's success in community life, our social worker assists patients and families in securing any needed social, financial, and educational support.

To learn more about the Center and how it's serving patients: