What is Smith-Magenis Syndrome (SMS)?

Smith-Magenis Syndrome is a rare developmental disorder that impacts somewhere between 1 in 15,000 (about 0.0066% of the population) and 1 in 25,000 (0.004% of the population). Believed to be caused by the deletion of a small segment of chromosome 17 (and gene RAI1, in particular), Smith-Magenis Syndrome (SMS) can cause a variety of mental, behavioral, physical, and sleep-related issues. Although a Smith-Magenis Syndrome diagnosis can feel overwhelming, properly addressing SMS symptoms can help your loved one live a happy life. 

Table of Contents

What Are the Symptoms of Smith-Magenis Syndrome?

Treatment Strategies for Smith-Magenis Syndrome 

How Does Smith-Magenis Syndrome Affect Sleep?

What Are the Symptoms of Smith-Magenis Syndrome?

The symptoms of Smith-Magenis Syndrome can be broken into a few different categories. If your loved one has received a Smith-Magenis Syndrome diagnosis, here’s what you may be able to expect:

Mental and Behavior Effects of Smith-Magenis Syndrome

Smith-Magenis Syndrome can cause a wide variety of mental and behavioral symptoms. These may include:

• Mild to moderate intellectual disabilities
• Attention disorders
• Self-harm, including biting, hitting, head-banging, and skin-picking injury
• Self-hugging
• Delayed speech and language skills
• Temper tantrums
• Aggression
• Anxiety
• Impulsiveness

Physical Effects of Smith-Magenis Syndrome

Some of the most pronounced physical symptoms of SMS may not emerge until the individual reaches adolescence or adulthood. The physical effects of SMS include:

• Square facial structure
• Deep-set eyes
• Prominent lower jaw
• Flattened nose bridge
• Dental abnormalities
• Short stature
• Scoliosis
• Hoarse voice
• Low muscle tone
• Obesity
• Nearsightedness and other vision issues

Sleep-Related Effects of Smith-Magenis Syndrome

SMS can also cause a few different sleep-related issues. These include:

• Frequent waking at night
• Trouble falling asleep
• Disrupted sleep patterns

Unfortunately, these sleep-related symptoms of Smith-Magenis Syndrome may exacerbate many of the other symptoms, especially those related to behavior.

Treatment Strategies for Smith-Magenis Syndrome

Caring for a loved one with SMS can be stressful. Depending on the individual’s overall health and independence, he or she may require frequent or around-the-clock care, pulling your attention away from other daily responsibilities. 

With that in mind, finding a proper treatment plan is as important for your own health and wellbeing as it is for your loved one. Your treatment strategy for Smith-Magenis Syndrome may require a team of specialists, including: 

• Cardiologists
• Dental Specialists
• Speech Pathologists
• Audiologists
• Ophthalmologists
• Psychologists
• Physical Therapists

Early intervention from a coordinated team is extremely beneficial to improving your loved one’s overall quality of life. For example, if a speech pathologist can assist in enhancing the individual’s communication skills, you may see a reduction in outbursts and temper tantrums, which could allow your psychologist to reduce the number of prescription medications your loved one takes every day. 

How Does Smith-Magenis Syndrome Affect Sleep? A Deeper Look at Sleep and SMS

About 75-100% of individuals with SMS experience sleep issues like the ones we listed above (disrupted sleep, trouble falling asleep, and frequent waking at night or in the early morning). 

While further research is required, many scientists believe these sleep issues are related to disruptions in melatonin production, a hormone contributing to healthy sleep. In some patients with SMS, researchers have found inverted melatonin release patterns, meaning these individuals release more melatonin throughout the day than they do at night.

Because the nighttime quality of sleep is low among people with SMS, many of these individuals are tired throughout the day and may require frequent naps. SMS-related naps are sometimes even referred to as “sleep attacks” because the individual may feel an irresistible urge to sleep.

The Smith-Magenis Foundation recommends the following sleep hygiene best practices:

• Teach the individual when it’s OK to wake up. 
• Create a dark environment. Black-out blinds can be helpful here!
• Limit naps to the middle of the day. Preventing naps in the evening can help individuals with SMS fall asleep at night. 
• Take care of distracting medical issues, like gastro-oesophageal reflux.

Smith-Magenis Syndrome Beds

While following good sleep hygiene best practices can be helpful among some individuals with SMS, a Smith-Magenis Syndrome bed can be equally useful. 

The Safety Sleeper®, for example, is specially designed for individuals with special needs. With its fully enclosed design, memory foam mattress, and extra frame padding, The Safety Sleeper® creates a soothing environment that helps many individuals fall asleep faster and stay asleep longer. 

Your bed doesn’t have to be expensive. In fact, you can even seek insurance coverage for the Safety Sleeper®. Contact us if you have questions!