Your Spinal Muscular Atrophy Care Team

If you or your child has spinal muscular atrophy (SMA), a team of medical professionals can help you manage your symptoms.

A great care team will also help lessen complications. That will greatly improve quality of life.

Since each person with SMA has different things to deal with, there isn’t one combination of doctors and therapists who are involved in the care of everyone with SMA. But in general, your care team will be made up of experts who can help you or your child move and breathe better.

Neurologists

These doctors deal with problems with your nerves or nervous system. A neurologist or pediatric neurologist could be one of the first people you see, since SMA is the loss of specialized nerve cells calls motor neurons.  

Your neurologist understands SMA and the problems that can come up as the disease progresses. They’ll keep a close eye to make sure any complications that come up (twitching, scoliosis, etc.) are treated quickly and effectively.

Pulmonologists

Any breathing issues are handled by pulmonologists. Weakness in the muscles that help you breathe is a major problem in some forms of SMA. This can cause symptoms like:

  • Trouble breathing
  • Yawning
  • Not being able to lie flat

Chest infections can happen, as can as heart damage and respiratory failure. That means that a person’s blood is not getting enough oxygen and they aren’t getting rid of the carbon dioxide in their blood.

A pulmonologist will recommend the best form of treatment for whatever breathing problems might come up. They can also suggest ongoing care that can help make breathing easier.

Speech and Language Pathologists

If your baby was born with SMA or got it before they were 6 months old, they may have trouble swallowing and sucking. Speech and language pathologists know how to treat swallowing disorders and speech problems that can happen because of weakened muscles.

They can also help you find solutions that can help you or your child deal with any lack of nutrition that might happen if chewing muscles are weak. You could also learn ways to prepare food that make swallowing easier.

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Orthopedists

These doctors prevent, diagnose, and treat problems with:

  • Bones
  • Joints
  • Ligaments
  • Tendons
  • Muscles

For example, back weakness due to SMA can make it hard to move, sit up, and stand. It can lead to spinal problems as well. An orthopedist, along with your medical care team, can make the best recommendations about treatments.

Physical and Occupational Therapists

They can help you make the most of your muscles so you can do some things with little help. These therapists can recommend and teach you to use products like walkers and wheeled vehicles that can help you move around. They can even show you tools that can help with things like writing, painting, and using the computer.

Gastroenterologists

These are doctors who treat problems with the digestive system. Some children with SMA may have problems like weakened stomach muscles. Those can lead to constipation or other digestive issues.

Dietitians

Dietitians can also help you make sure that people with SMA get the proper nutrition. They can help you choose and make foods that are easier to eat, and help create and recommend nutrition plans.

Because people with SMA may not get a lot of exercise, weight gain can be an issue, too. Your dietitian can help you or your child stay at a healthy weight while making sure your diet has all the nutrients you need.

Social Workers

Getting the right kinds of support is an important part of living with any illness. That support can include:

  • Individual and family counseling
  • Help sorting out financial issues
  • Recommendations for community support

Social workers play a vital role in SMA care. They can connect you with the best resources to help make sure everyone in your family gets the help they need.

WebMD Medical Reference Reviewed by Hansa D. Bhargava, MD on December 19, 2019

Sources

SOURCES:

Cure SMA: “About SMA.”

Neuromuscular Disorders: “Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care.”

MDA, Muscular Dystrophy Association: “Spinal Muscular Atrophy.”

NIH, National Heart, Lung, and Blood Institute: “Respiratory Failure.”

AAOS: “Orthopedic Surgeons: Restoring mobility and keeping our nation in motion.”

American College of Gastroenterology: “What is a Gastroenterologist?”

PLOS One: “Histopathological Defects in Intestine in Severe Spinal Muscular Atrophy Mice Are Improved by Systemic Antisense Oligonucleotide Treatment.”

Stanford Health Care: “Spinal Muscular Atrophy.”

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