“The benefits of having a specialized care team, as I do, is that no stone is left unturned. I’m able to figure out every different aspect of my healthcare. Absolutely everything is checked over. At a certain point in time, the progression’s going to hit. And if you’re prepared now, it can make it a lot easier. If you build your care team now, you’re going to be set up to succeed.”
– Nevin, Living with Becker
Need help putting together a Becker Care Team?
There are resources available.
Importance of a Becker Muscular Dystrophy Care Team
Becker muscular dystrophy is a complex disease affecting different systems in your body. Working with your specialized Care Team to help maintain muscle function and manage symptoms is an important part of managing your condition.
Neurologist
Certain Neurologists specialize in the treatment of neuromuscular diseases like Becker muscular dystrophy and help coordinate care across different Care Team specialists.
Physical Therapist
Manages contractures and develops custom exercise programs to help maximize and preserve mobility.
Cardiologist
Monitors for changes in cardiac health and treats to prevent and delay worsening of cardiac function.
Primary Care Physician
Coordinates general care for issues not related to Becker.
Endocrinologist
Monitors bone health and treats conditions associated with low testosterone.
Gastroenterologist
Treats a variety of symptoms including constipation, gastroesophageal reflux, and gastrointestinal motility issues.
Psychiatrist / Psychologist
Provides mental health support.
Pulmonologist
Helps individuals living with Becker with breathing issues due to respiratory muscle weakness.
Orthopedist
Treats fractures and related bone complications.
Occupational Therapist
Helps people with disabilities make adaptations for activities of daily living and working.
Social Worker
Helps individuals living with Becker coordinate needed resources and support.
Geneticist
Assists with the diagnosis of Becker (affected individuals and family members) and provides information to understand how Becker may be inherited and affect other family members.
Speech Therapist
Provides assistance to individuals living with Becker who are experiencing difficulty swallowing.
“Becker affects the whole body, many systems of the body. That’s why you need to see a variety of different doctors.”
Charlie – Living with Becker
Navigating your Care. Working with your Care Team.
Medical Appointments
Receive regular checkups from your Care Team to monitor disease progression and discuss symptom management.
Rehabilitative Care Specialists
Rehabilitative care specialists including physical, occupational, and speech therapists can tailor options to help manage symptoms and improve quality of life.
Remaining Active
Your Care Team can help to develop an exercise program that best fits your needs and lifestyle. Maintaining an active lifestyle can be very beneficial for individuals living with Becker muscular dystrophy. Remaining active can minimize the potential of joint contractures, muscle fatigue, and reduce loss of muscle functions critical to performing everyday activities.
Symptom Management
Manage symptoms by coordinating with your Care Team. Over the counter medications may be used to treat muscle pain or cramps. Your Care Team may prescribe corticosteroids at their discretion to aid in muscle function or recommend the use of braces to aid in mobility.
Emotional Support
At times, you may feel overwhelmed managing your condition. Members of your Care Team including Psychiatrists, Psychologists, and Social Workers are trained to offer emotional resources to help support your needs.
Clinical Trials
Clinical trials are being conducted to evaluate the safety and efficacy of potential Becker muscular dystrophy treatments. Discuss clinical trial participation with your Care Team to help decide whether a specific trial fits your needs.
