Sleep disorders in SMA: Understanding challenges and solutions

Last updated March 3, 2025, by Agata Boxe
Fact-checked by Patrícia Silva, PhD

Symptoms of spinal muscular atrophy (SMA), such as breathing problems and muscle weakness, can make it difficult to get a good night’s rest.

SMA is a rare neuromuscular disease that is usually caused by mutations in the SMN1 gene. There are several different types of SMA.

SMA causes muscle weakness and atrophy that worsens with time and may eventually lead to problems with moving, speaking, swallowing, and breathing, along with other symptoms.

Sleep disorders in SMA are common and may impact your overall well-being, but improving sleep quality in SMA is possible. Medications, physical aids, and lifestyle adjustments can help you sleep better and boost your overall quality of life.

Sleep challenges in SMA

Living with SMA involves serious challenges that may include trouble breathing and fatigue, which can affect your sleep quality as well as the amount of time you actually sleep. It can also negatively impact your mental health, which can also prevent you from getting a good night’s rest.

The overwhelming muscle weakness from SMA can eventually affect respiratory muscles, leading to breathing difficulties while asleep.

Sleep-related breathing disorders in SMA include sleep apnea, which causes breathing to stop and start repeatedly, and nocturnal hypoventilation in SMA, which is breathing that is too slow or shallow. The link between SMA and sleep-disordered breathing appears to be most common in SMA type 1.

Muscle weakness and muscle loss can limit your ability to change your sleeping positions and lead to discomfort and pressure sores. These and other SMA symptoms can also contribute to insomnia.

Being diagnosed with SMA can trigger worry about its effects on your life, contributing to stress and anxiety, which can make it even more difficult to sleep well.

Importance of sleep

Insomnia, sleep disruptions, and breathing disorders, such as sleep apnea, can significantly affect your ability to get enough rest. Lack of sleep can then impact your physical and mental health.

Sleep is essential for the muscles to recover from the work they must do every day to fuel daily activities. Because muscle weakness is already a problem in SMA, sleep becomes even more important, as not getting enough may further contribute to loss of muscle strength.

Sleep problems can also worsen fatigue, a common symptom of neuromuscular disorders. Not getting enough quality sleep can make you groggy and tired during the day.

The resulting exhaustion can then put you in a bad mood, affecting your emotional well-being.

Strategies for improving sleep quality in SMA

The severity of SMA symptoms and their impact on sleep require a comprehensive approach to treatment. It may include medication, devices that support breathing, and lifestyle adjustments such as following a bedtime routine.

Medical interventions

If you experience sleep issues in SMA, you should tell your healthcare provider. They can recommend ways to improve sleep based on your symptoms and type of SMA.

For instance, your doctor may prescribe sleep medicines for insomnia. They can also suggest devices for sleep apnea, such as BiPAP and CPAP machines, which deliver air through a mask on your face.

Or, they may want to check if you have a sleep disorder with a test that assesses sleep. It will probably be recommended that you do the sleep study at a sleep lab.

The study involves placing sensors on you to track eye movements, breathing, and heart activity, among other factors, while you’re asleep. The results will help your doctor figure out the causes of your sleep issues and the best way to address them. (While doing a study at home may be an option, it is usually less thorough.)

Bed sores can become a problem if SMA muscle weakness makes it difficult for you to move out of an uncomfortable sleeping position.

To help you sleep more safely and comfortably, you may want to see an occupational therapist to help you select the best physical aids and modifications, such as adjustable beds, specialized pillows, and supports.

The occupational therapist can also show your caregiver how to assist you with repositioning during the night.

Lifestyle adjustments

Dealing with SMA sleep issues can be challenging, both physically and emotionally. But by making changes to your lifestyle, from developing a bedtime routine to managing stress, getting a good night’s rest is a real possibility.

Sleep management strategies for SMA include:

• a smart bed that lets you adjust its temperature, elevation, and firmness
• extra pillows for support and to prevent or address bed sores
• loose, soft pajamas to prevent rubbing if you move around
• not drinking too much or too late at night to prevent waking up to use the bathroom
• blackout blinds or curtains to keep your bedroom dark
• mindfulness meditation or deep breathing to help you relax.

Stress can worsen sleep problems, so trying to manage it may help you sleep better. Talking to a therapist can help you know what to do to relieve psychological tension.

Joining a support group for people with SMA, such as SMA News Today’s Facebook group, can be a good way to find emotional comfort and understanding. Your peers may also have advice on sleep and SMA.

Role of caregivers in sleep management

If you are caring for your child or another relative with SMA, you can support them in trying to improve their sleep. But you should also keep in mind that you need and deserve good sleep to maintain your own well-being.

First, speak with your loved one’s doctor and occupational therapist about what you can do to help. They may offer advice on useful sleep aids and teach you how to assist with repositioning at night.

Keep a record of your loved one’s sleep disturbances. Sharing your notes with their doctor and occupational therapist can help the healthcare team come up with an effective treatment plan.

Children with SMA often face long hospital stays and may find it even more difficult to get good rest at a medical facility.

Consider preparing a “sleep kit” with slumber necessities, such as a lightweight blanket, pajamas, a special stuffie, and reminders of home, such as a family photo. Consider packing it in advance so you can just grab and go if it’s needed. (As you prepare their hospital sleep kit, throw in an eye mask for yourself. It will protect your eyes from the glaring hospital lights if you want to nap or sleep.)

Finally, look after your own sleep needs. Caregiving can exhaust the body and mind. Sleep is one of the ways you can replenish your energy levels.

Join your child in creating a successful sleep routine by, for instance, meditating or practicing deep breathing together.

When to seek professional help

Don’t delay getting professional assistance with sleep problems. Sleep plays such an important role in muscle health and other aspects of SMA that timely medical attention cannot be overestimated.

It is especially crucial to consult a doctor if you notice snoring or other respiratory challenges during sleep in SMA, which can be a sign of sleep apnea. If not treated, sleep apnea can lead to serious respiratory complications and cardiovascular issues.

Managing sleep problems in SMA patients may require a team-based approach to fully address their complexity. Your doctor may recommend involving other experts such as:

• a pulmonologist, who specializes in treating issues affecting the lungs and airways
• a sleep therapist, who diagnoses and treats sleep disorders
• an occupational therapist, who can recommend home modifications and assistive devices for better sleep.

The members of your sleep care team can then work together to come up with a plan to help your child — and you, too — sleep better.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.