Connect with others who understand.

sign up log in
About mySMAteam

Connect with others who understand.

sign up log in
About mySMAteam

Pneumonia and SMA: How To Lower Your Risk

Posted on September 20, 2021
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Sarah Winfrey

Spinal muscular atrophy (SMA) causes muscle weakness and muscle wasting, which can also occur in the respiratory (breathing) muscles. Muscle weakness surrounding the lungs, as well as other factors, can put people with SMA at risk of developing pneumonia.

Pneumonia is an infection of the lungs caused by viruses, bacteria, or fungi. People with SMA may also develop aspiration pneumonia — a form of the illness caused by the aspiration (inhalation) of food or drinks into the airways.

Although pneumonia can be scary, there are steps you can take to help prevent it while living with SMA.

Why Is Pneumonia Dangerous for People With SMA?

There are several reasons why people diagnosed with SMA are at greater risk of other conditions like pneumonia, including:

Weak Cough

A person with SMA may have severe weakness in the muscles surrounding the lungs, which can reduce the power and effectiveness of their coughs. A weak cough can make clearing the airways more difficult, which means that more bacteria and other substances can infiltrate and infect the lungs.

Underdeveloped Lungs

People diagnosed with SMA often have underdeveloped lungs. Underdeveloped lungs pose a danger because they are small. When pneumonia invades an underdeveloped lung, it can more easily take over the whole lung because there is less surface area to infect.

Alone, underdeveloped lungs or a weak cough can make a person more susceptible to pneumonia, and together, they raise the risk even more.

Risk of Aspirating Food or Drinks

People diagnosed with SMA are also more likely to struggle with aspiration pneumonia. Aspiration pneumonia can occur when food or drink is inhaled into the lungs rather than swallowed into the stomach. People with SMA are at risk of aspirating (breathing into the airways) food when the muscles in their throat are not strong enough to properly swallow.

SMA With Respiratory Distress Type 1

SMARD1 is a very rare type of SMA. It specifically pertains to the lungs and causes significant breathing problems and respiratory distress. Children with this diagnosis have weaker lungs than those diagnosed with SMA and may be in greater danger of pneumonia.

Preventing Pneumonia With SMA

There are several actions you can take to avoid aspiration pneumonia and bacterial or viral pneumonia.

Avoiding Aspiration Pneumonia

In order to avoid aspirating food or beverages, take the following precautions whenever you eat or drink:

  • Avoid certain foods and beverages.
  • Eat and drink slowly.
  • Take small bites.
  • Don’t eat while distracted.
  • Sit upright during and after meals.
  • Try occupational therapy.
  • Use a feeding tube.

Avoid Certain Foods

Foods and beverages that are too thick and sticky — such as peanut butter — or foods that are too thin and runny — such as soup or juice — can cause issues with swallowing. Also be careful with foods that seem difficult to swallow, such as tough pieces of meat.

Eat and Drink Slowly

It is important to take your time when eating and drinking. Chew your food thoroughly before you swallow it. Rushing through a meal or beverage may cause you to splutter, choke, or inadvertently aspirate food or drinks.

Take Small Bites

Make sure your food is cut into small pieces. Never put anything larger than a bite-sized piece of food into your mouth. Taking smaller bites can also help you slow down while eating, which decreases the risk of aspiration.

Don’t Eat While Distracted

Take care to focus only on your meal while eating. Watching TV, talking on the phone, or otherwise splitting your attention between your meal and another activity can be distracting and increase your risk of aspiration.

Sit Upright During and After Meals

Keep your upper body as straight as possible while eating and for at least an hour after you eat. It may be helpful to prop yourself up on a pillow or in a bed that lifts your shoulders. You should aim to keep your upper body at least at a 45-degree angle.

Try Occupational Therapy

Occupational therapy may help you learn tips and tricks for avoiding aspiration pneumonia when you eat. Physical therapy may also keep the respiratory muscles as strong as possible.

Use a Feeding Tube

If you are taking steps to prevent aspirating food or drinks but are still having difficulties eating or drinking safely, you may want to talk to your doctor or a neurologist about a feeding tube.

Feeding tubes can provide nourishment directly to your stomach, so you don’t have to worry about chewing, swallowing, or aspiration. There are different types of feeding tubes. For example, a gastrostomy tube or a nasogastric tube can work for people diagnosed with SMA. Talk to your health care provider or medical team to find out what will work for you.

Preventing Bacterial and Viral Pneumonia

People with SMA are more likely to develop pneumonia after coming down with viral or bacterial illnesses compared to the general population. Because of this greater risk, you should take extra precautions to avoid illness, especially during cold and flu season. Prevention strategies include avoiding some regular activities, especially if there will be many people present or if they are not taking precautions to prevent the spread of any upper respiratory infections they may be carrying.

Some steps you can take to help prevent viral or bacterial pneumonia with SMA include:

  • Receiving necessary vaccines
  • Practicing proper hand hygiene
  • Asking others to help avoid illnesses
  • Avoiding sharing utensils
  • Treating your SMA
  • Getting medical help as soon as possible

Receive Necessary Vaccines

In general, research suggests that flu and pneumococcal (pneumonia) vaccines can reduce the chance of severe illness for people with SMA. You should always talk to your doctor about which vaccines you should receive, given the specifics of your particular situation.

Your situation may change from year to year. If your immune system is compromised, for example, your doctor may recommend avoiding vaccines for a year or postponing them until your immune system is stronger.

Practice Proper Hand Hygiene

Make sure that you and everyone in your home washes their hands for at least 20 seconds several times a day, including after coughing, sneezing, and using the bathroom.

Ask Others To Help Avoid Illnesses

Alert those you live with about your increased risk of pneumonia if you get sick. Ask these people to take extra precautions, including covering all coughs or sneezes appropriately and staying away from other people who are sick.

Avoid Sharing Utensils

Avoid sharing cups, bowls, plates, straws, or other utensils with others — even people in your home. Don’t eat food off anyone else’s plate. Ask the people closest to you to follow these same rules for your protection.

Treat Your SMA

Depending on the form of SMA that you have, there may be medical options that can improve your respiratory function. For instance, children with SMA type 1 who take Spinraza (nusinersen) have improved respiratory function over those who don’t. Talk to your medical team about what SMA treatment options may be helpful.

Get Medical Help as Soon as Possible

If you feel sick or like you are not breathing well, get medical help as quickly as you can. Fast intervention can make a huge difference in whether you develop pneumonia — or, if you do, how severe the infection becomes and how quickly you recover.

If you even think that you may have come down with something, let your doctor know as soon as possible. They will be able to determine what type of respiratory care you need, such as noninvasive ventilation (breathing support) or invasive ventilation. Working with your doctor on the right solution can help you avoid respiratory failure or additional health problems.

Find Your SMA Team Today

On mySMAteam, the social network for people with SMA, members come together to ask questions, give advice, and share their stories with others who understand life with spinal muscular atrophy.

Have you or a loved one had pneumonia while living with SMA? What do you do to reduce your risk? Share your experience in the comments below or by posting on mySMAteam.

All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.

Related articles

Spinal muscular atrophy (SMA) and Tay-Sachs disease are neurodegenerative, autosomal recessive...

Tay-Sachs vs. Spinal Muscular Atrophy: Comparing Late-Onset Forms

Spinal muscular atrophy (SMA) and Tay-Sachs disease are neurodegenerative, autosomal recessive...
Neuromuscular disorders such as spinal muscular atrophy (SMA) and myotubular myopathy (MTM) can...

The Difference Between SMA and Myotubular Myopathy

Neuromuscular disorders such as spinal muscular atrophy (SMA) and myotubular myopathy (MTM) can...
Congenital myasthenic syndrome (CMS) refers to a group of disorders that cause muscle weakness,...

What's the Difference Between SMA and Congenital Myasthenic Syndrome?

Congenital myasthenic syndrome (CMS) refers to a group of disorders that cause muscle weakness,...
Ninety percent of children with spinal muscular atrophy (SMA) develop scoliosis, an abnormal...

Quiz: Do You Know Everything You Need To Know About Scoliosis?

Ninety percent of children with spinal muscular atrophy (SMA) develop scoliosis, an abnormal...
Spinal muscular atrophy (SMA) affects many body systems and not just the muscular system. Some of...

Beyond Muscle Wasting: Other Ways SMA Affects the Body

Spinal muscular atrophy (SMA) affects many body systems and not just the muscular system. Some of...
Charcot-Marie-Tooth disease (CMT) and spinal muscular atrophy (SMA) are two degenerative...

Charcot-Marie-Tooth Disease and SMA: What Are the Differences?

Charcot-Marie-Tooth disease (CMT) and spinal muscular atrophy (SMA) are two degenerative...

Recent articles

About one-third of people with spinal muscular atrophy (SMA) are adults.Adults with SMA may have...

Treatment Options for Adults with SMA

About one-third of people with spinal muscular atrophy (SMA) are adults.Adults with SMA may have...
Clinical trials may test new drugs or new dosages or combinations of drugs for spinal muscular...

5 Reasons To Consider Participating in SMA Clinical Trials

Clinical trials may test new drugs or new dosages or combinations of drugs for spinal muscular...
Clinical trials for spinal muscular atrophy (SMA) test new treatments, new dosages of existing...

How Do Clinical Trials Work for SMA?

Clinical trials for spinal muscular atrophy (SMA) test new treatments, new dosages of existing...
Clinical trials are designed with safety as a primary concern.Before a new drug, new dosage, or...

Are Clinical Trials Safe for People With SMA?

Clinical trials are designed with safety as a primary concern.Before a new drug, new dosage, or...
Costs for spinal muscular atrophy (SMA) medications are high, but financial assistance programs...

Tips for Staying on Spinal Muscular Atrophy (SMA) Therapies

Costs for spinal muscular atrophy (SMA) medications are high, but financial assistance programs...
The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month. In...

UCSF Health and mySMAteam Partnership: SMA Awareness Month 2022

The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month. In...
mySMAteam My spinal muscular atrophy Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close