About Neuromuscular Disorders > Your Healthcare Team

Your Healthcare Team

Your primary care physician (for example, your pediatrician) will remain an important member of the healthcare team. However, there are multiple specialists that may be involved in the care of a patient with a NMD. The need and timing of specialty visits are initially determined by your primary specialist who is often a neurologist, but sometimes may be a physical medicine physician. Below is a brief description of the different specialists that may be involved in the care of a NMD patient:
  • Neurologist — A neurologist is an expert in diagnosis, treatment, and management of neurological diseases. Once a DMD diagnosis has been established, the neurologist will work with a team of specialists to manage you/your child's neuromuscular disorder. He/She will act as the "point person" of the team that is responsible for you/your child's treatment.

  • Physiatrist (Physical Medicine & Rehabilitation/PMR) — A physiatrist is an expert who treats injuries or illnesses that affect how people move. Your physiatrist will work with your child, you, school personnel and therapists to help maximize your child's motor abilities and function. This physician will also be responsible for evaluating the need for and prescribing bracing and medical equipment.

  • Cardiologist — A cardiologist specializes in identification and treatment of heart problems. Because heart problems often occur in patients with neuromuscular disorders, a cardiologist is essential to monitor your child and treat any problems that may develop.

  • Pulmonologist — A pulmonologist specializes in the diagnosis and treatment of lung and respiratory tract problems. Patients with neuromuscular disorders can experience weakness of the respiratory muscles, which affects ability to breathe. He/She will work with your team to address any pulmonary issues.

  • Genetic Counselor — Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. A genetic counselor will explain and discuss testing results. Once a diagnosis has been determined, he/she will provide details about the origins of the neuromuscular disorder and impact on the patient, siblings and parents.

  • Social Worker — The social worker serves as an advocate for you/your child's and your family, locating resources to support and enhance the management of your child's neuromuscular disorder. Your social worker will work with school staff and community agencies to ensure that your child's needs might be accommodated.

  • Physical Therapist — Physical therapists have extensive training in muscle function. You/your child's physical therapist will work to improve your child's muscle function, flexibility, and comfort through direct therapy and home therapy regimens.

  • Occupational Therapist — You/your child's occupational therapist will assist your child in maintaining optimal functionality in life. The therapist will evaluate how your child performs a variety of tasks, assist in maximizing your child's ability to function in daily living, school and work situations, and intervene if reduced or permanent loss of function interferes with performance.

  • Nutritionist — You/your child's nutritionist will work with you and your child to ensure that your child is eating a healthy diet and maintaining optimal weight. While some individuals with neuromuscular disorders have significant problems with obesity (particularly those taking steroids), there are other children with dystrophies who are very underweight.

  • Nurse — The clinic nurse is often your contact to help access, forward to, and retrieve information from other team members. The nurse frequently ensures that physician orders are expedited and assists in appointment making if needed. Community agencies and school personnel frequently contact the nurse when prescriptions are requested, forms require completion, or specialty physician consultation is needed.

 

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