Who Treats Spinal Muscular Atrophy?
People with spinal muscular atrophy (SMA) require ongoing, specialized care from a team of doctors and other health specialists. The team is usually managed by a doctor who specializes in neuromuscular disorders, called a neurologist.
The care team may include pulmonologists, cardiologists, physical therapists, occupational therapists, and dietitians. These healthcare professionals all specialize in certain aspects of SMA.
How do I find the right healthcare team?
Every person with SMA is different and needs personalized care. The members of each person’s care team and their level of involvement may be different. The doctors a person might need may also change over time.1
Many hospitals and clinics have programs that bring together a team of specialists. This allows doctors to easily communicate with each other. Here are some questions to think about when searching for a doctor or healthcare team to manage your or your child’s condition:2
- Do they create a compassionate, welcoming, and family-centered environment?
- Do they have expertise in the aspects of SMA you or your child need?
- Do they have experience treating other people with SMA?
- What do other people say about the treatment they received?
- Do they communicate to your child and family in a professional, friendly, and patient way?
- Are they involved in research? Do they have access to new treatment approaches?
- Do they provide resources for support outside of the clinical setting?
Doctors who treat spinal muscular atrophy
Neurologists have expertise in treating conditions of the nervous system. They are usually the ones to diagnose SMA. Most often, the neurologist who diagnoses SMA will specialize in treating children (called a pediatric neurologist). They also coordinate the care team. Neurologists perform tests for motor function every few months. They can then prescribe certain therapies with help from other members of the care team.1,3,4
Pediatricians manage healthcare for children until age 18. They may be trained to diagnose and treat a broad range of childhood illnesses. For children with SMA, it is important to have a pediatrician who can look out for the general health of the child.1
Pulmonologists, or respiratory doctors, specialize in breathing and the respiratory system. In severe types of SMA, respiratory muscle weakness leads to respiratory failure. Proactive respiratory therapies can improve health outcomes. Pulmonologists test lung function, perform airway clearance and ventilation techniques and prescribe medicines. People with more severe SMA should see a pulmonologist every 3 to 6 months.1,4,5
Cardiologists specialize in conditions of the heart. Certain heart defects have been identified in severe forms of SMA. Cardiologists perform tests to monitor heart function and suggest treatments.5,6
Therapists who treat spinal muscular atrophy
Physical therapists use exercise to improve physical function and strength. Proactive physical therapy can improve outcomes and prevent complications. Physical therapists perform tests for posture, motor function, muscle strength, and range of motion. They can then suggest devices and design treatments to improve movement. Depending on the type of SMA, this includes stretching, functional and strengthening exercises, walking training, and postural support. The goal is often to prevent complications like scoliosis and joint tightness.1,3,4,7
Occupational therapists help increase independence in daily activities by improving physical functioning. They first perform tests to analyze a person’s abilities and needs, such as walking, dressing oneself, writing, or using a computer. They can then recommend treatments or assistive devices to improve activity and participation. Occupational therapists work with schools to help students with SMA. Occupational therapists also provide therapy for feeding, eating, and swallowing. This is especially important in SMA because aspiration can be a concern.1,7
Speech therapists specialize in different aspects of speech, including language and vocal quality. SMA may cause people to have difficulty speaking. This is due to muscle weakness, not mental, emotional, or memory problems. Speech therapists can help improve the ability to communicate and suggest assistive devices.5,8
Nutritionists and dietitians ensure you or your child eat the right food to promote growth and motor function. Muscle weakness in SMA may lead to reduced food intake because of difficulty swallowing and other gastrointestinal (GI) symptoms. Dietitians monitor weight, fluid and nutrient intake, and GI symptoms. They can suggest a diet to improve food intake. They can also recommend feeding or gastrostomy tubes.1,3
Genetic counselors specialize in the inheritance of genetic diseases. If you have a family member with SMA, you may want to see a genetic counselor. They can test you for the SMA gene. Genetic counselors can determine if other family members may have SMA. They can also discuss the risk of a future child having SMA and perform prenatal tests.1,7
Social workers and child life specialists play many roles to support physical and mental health. They help people adjust to new challenges, advocate for community resources, and respond to crisis situations. Social workers can focus on family needs, academic needs, or physical and mental care. For people with SMA, social workers are often the link between the doctors, the family, and the community.1,7