Living With SMA

People with spinal muscular atrophy (SMA) face many challenges throughout life. Physical symptoms can lead to emotional and social challenges for children. Dependence on others and isolation can worsen mental health. SMA can also make it hard for adults to work and date. Plus, healthcare costs for people with SMA are often high.

Coping with SMA-related challenges is not easy. Taking care of your mental health and building a support network can help you cope and live your life to the fullest.

Children with spinal muscular atrophy

Children with SMA have normal mental and emotional development. They are fulfilled by the same activities as other children. Engaging in age-appropriate activities can increase independence and confidence. Assistive equipment and changes to the home and school environments can help with this.

However, children with SMA face physical and social challenges. Physical limitations may make it hard to participate in activities. Depending on other people can cause them to feel like they have a lack of control. This can worsen quality of life.1,2

Children with SMA carry a large emotional burden. Sadness, anxiety, and loneliness are common. Some ways to improve mental health include:1,2

  • Finding ways for them to exercise
  • Ensuring they have proper nutrition
  • Talking to a social worker, counselor, or therapist
  • Finding healthy hobbies outside of school
  • Maintaining optimism
  • Arranging social activities or support groups

Adults with spinal muscular atrophy

Adults with SMA have the same desires for careers, relationships, and independence. Physical limitations and social stigma can make these harder. Gradual loss of muscle strength can decrease independence and engagement in activities. This can reduce quality of life and worsen mental health.2,3

Adults with SMA report that working can help improve social life, attitudes, and economic independence. Finding a job can be hard. However, certain laws protect workers and require employers to make reasonable accommodations.2,3

Coping and grief

Diagnosis of SMA often happens during infancy. As a parent, receiving the news that your child has SMA can cause a range of emotions. Grief, fear, and distress are all normal. These emotions are also common when diagnosis happens later in childhood or adulthood. Ways to cope with a new diagnosis of SMA include:4

  • Learn as much as you can about SMA and its treatments
  • Try to manage the aspects of your life that you can
  • Build a strong support network of people you can talk to
  • Ask for help from family and friends
  • Find hobbies and interests
  • Talk to a therapist or counselor

People with SMA also cope with the condition as it progresses. Any chronic condition can increase the risk of having periods of poor mental health. As symptoms change over time, so will its impact on your mental health. Ways SMA can impact mental health include:1,2,5

  • Lack of control over symptoms
  • Anxiety about the future (anticipatory grief)
  • Low self-esteem
  • Lack of independence
  • Social isolation

Children with type 1 SMA have a life expectancy of under 2 years. Grief following the death of a child or loved one can be intense. Plan end-of-life care options ahead of time. Let yourself and your loved ones grieve however you need to. Ask for support from friends and family when you need it.6

Mental health and support groups

Poor mental health increases the risk of having other health problems. Talk to a therapist or counselor about ways to stay mentally healthy. They can help find ways to cope with future challenges. Some ways to keep yourself healthy include:2,5

  • Maintaining optimism
  • Developing a positive sense-of-self and body image
  • Joining support groups
  • Building a strong support network
  • Practicing mindfulness
  • Eating well and exercising
  • Finding ways to be independent

An SMA support group can be a good place to share experiences and receive advice. Resources for SMA support include:7

  • Muscular Dystrophy Association (MDA)
  • CureSMA
  • Gwendolyn Strong Foundation
  • SMA Angels Charity
  • SMA Foundation
  • FightSMA

Costs of living with spinal muscular atrophy

People with SMA face high healthcare costs from hospital visits, medical equipment, and prescription drugs. Yearly costs vary widely for each person. This depends on disease severity, treatments, and other personal factors. Better treatments and screening will reduce healthcare costs.8

According to a recent study, the average yearly healthcare cost for someone with type 1 SMA is about $130,000. Most of this comes from inpatient hospital visits. Taking SpinrazaⓇ (nusinersen) reduces this to an average of about $90,000. This is because Spinraza reduces the frequency of hospital visits.8

Most people must rely on health insurance to cover these high costs. Many people with SMA and their families get coverage from private insurance or Medicaid. Talk to your employer or insurance provider about coverage details.

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Written by: Matt Zajac | Last reviewed: May 2021