Spinal muscular atrophy (SMA) is a genetic disease and neuromuscular disorder that destroys motor nerve cells (neurons) in the brainstem and spinal cord. Disruptions in the survival of motor neuron 1 gene and survival motor neuron protein interfere with nerve cell to muscle communication. This ultimately results in disruptions in motor function as well as muscle weakness and degeneration.

In addition to physical symptoms, many people with SMA experience depression. Caregivers of individuals with SMA can also be susceptible to the effects of depression. Recognizing and understanding depression in SMA is an important step toward managing symptoms and living a healthier, happier life.

Who Gets Depression?

Depression can affect anyone — this includes people diagnosed with SMA. Caregivers can also be at risk of developing depression. Prevalence rates can vary across different populations, but there are several key risk factors for depression.

Prevalence

Major depressive disorder (or depression) is one of the most commonly diagnosed mental health conditions. In the United States alone, more than 17 million people (approximately 7 percent) have had at least one major depressive episode. Women report higher rates of depression (nearly 9 percent), while the age group most affected by depression is 18- to 25-year-olds (about 13 percent).

Research suggests that the prevalence rates of mental illnesses can be much higher in individuals with chronic diseases. One review of the available scientific literature estimated the prevalence of depression in those with chronic physical diseases (cancer, heart disease, renal disease, and chronic obstructive pulmonary disease) was as high as 79 percent.

Risk Factors

Aside from gender and age, there are other risk factors for depression. These risk factors can be biological, psychological, or even environmental. Stress is one of the major risk factors for developing depression. Dealing with a chronic illness like SMA can be very stressful for individuals with the condition as well as caregivers.

Depression in People With SMA

There are many struggles of living with SMA — physical, psychological, social, financial, and practical. Depression is a component of the psychological domains affected in individuals with SMA. One study shows that people with SMA have many barriers, including those that limit engagement with health services. Depression may be under-recognized in individuals with SMA. More research is needed on how SMA intersects with depression.

Depression in Caregivers

Caring for someone with SMA can be very difficult. Caring for children with chronic diseases is associated with higher rates of depression. For example, one study showed that approximately 75 percent of the caregivers for chronically ill children reported mild to severe depressive symptoms. It can be particularly challenging for the caregivers of young children with SMA.

Caring for children with SMA can require around-the-clock care, financial stressors associated with SMA care, fear of the future, and the uncertainty of their child’s future. Sometimes, it’s even the seemingly small things that can bring caregivers down. One member of mySMAteam said, “Having a son with SMA is hard! Seeing other dads playing and doing things that I can’t with my son makes it very hard to deal with.”

Another member of the community, dealing with the SMA-related death of her grandson said, “We struggle every day. I really need to reach out to people, cause depression is getting the best of us. God bless you all!”

Recognizing Depression

Sometimes, depression can be difficult to recognize. Being familiar with the many depressive symptoms is one way to increase depression awareness.

Signs and Symptoms

There are many signs and symptoms of depression, including:

• Feeling sad, empty, worthless, or hopeless
• Frequent tearfulness
• Having angry outbursts, feeling irritable or frustrated
• Anhedonia (a loss of interest or pleasure in most or all normal activities, such as sex or hobbies)
• Sleeping too little (insomnia) or sleeping too much
• Lack of energy
• Weight changes (either losses or gains) and appetite changes
• Feeling guilty
• Trouble concentrating, making decisions, and remembering
• Thinking frequently about death, having suicidal thoughts, or attempting suicide
• Back pain or headaches

Managing Depression

Once depression is recognized, the treatment process can begin. A family doctor can refer you or your loved one to a specialist such as a psychiatrist or clinical psychologist. These mental health professionals usually conduct in-depth personal interviews and may use mental health questionnaires to make a diagnosis. From there, prescription medications, psychotherapy, or a combination of both approaches are used to manage the symptoms of depression.

Medications and Psychotherapy

Antidepressants are used to treat depressive symptoms. These medications primarily work by acting on a mood-altering brain chemical called serotonin. They are a major line of defense against the symptoms of depression. Two examples of these antidepressants include Prozac (fluoxetine) and Zoloft (sertraline).

Another treatment approach to depression involves talk therapy (also called psychotherapy) with a counselor or therapist. One popular and effective technique that is useful for the treatment of depression is cognitive behavioral therapy. Cognitive behavioral therapy is a structured approach. Skills like mindfulness, problem-solving, and acceptance are taught and can occur in either a group or one-on-one setting. Other support groups may also be helpful. There are several treatment options for depression — you just have to explore them with your doctors.

Building a Community

The social network mySMAteam is for people with spinal muscular atrophy. On mySMAteam, more than 1,300 members come together to ask questions, share advice and experiences, and make connections with people around the world who understand life with SMA.

Have you experienced depression alongside your SMA? Share your experience in the comments below, or start a conversation by posting on mySMAteam.