Coping with SMA Diagnosis

Reviewed by: HU Medical Review Board | Last reviewed: August 2021

Getting diagnosed with any chronic illness is an overwhelming experience. In spinal muscular atrophy (SMA), diagnosis usually happens at birth or during infancy. Delays and uncertainty about the diagnosis often add to the stress for families.

It is normal to feel a range of emotions after receiving an SMA diagnosis. Grief, frustration, and anxiety about the future are very common. Talk to your doctors about how to cope with the emotional burden of an SMA diagnosis. They can suggest ways to take care of your mental health while adjusting to the changes that come with the diagnosis.

Coping when your child is diagnosed with SMA

Receiving an SMA diagnosis is a life-changing event for parents and families. A stressful part is the time from first noticing symptoms to finally receiving a diagnosis. SMA diagnosis may be delayed because symptoms are similar to other neuromuscular conditions. A quicker diagnosis can help reduce stress for parents.1

Families are usually given the diagnosis of SMA by a doctor who specializes in childhood neuromuscular conditions. The news can cause a range of emotions, including shock, numbness, denial, and sadness. The way doctors present the diagnosis affects how families react. Some parents report receiving misleading information or no helpful information at all.1

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Even when a SMA diagnosis is quick and presented informatively by doctors, it is devastating to hear. Coping with the magnitude of the diagnosis while learning to manage your child’s healthcare can be overwhelming. Here are some ways to cope if your child is diagnosed with SMA:2,3

  • Learn about SMA and its treatments from trustworthy sources
  • Keep a list of questions to ask your doctor
  • Ask for help from friends and family members
  • Acknowledge that your emotions are normal
  • Join an SMA support group
  • Talk to a genetic counselor about other family members having or carrying SMA
  • Talk to a therapist about ways to handle and cope with difficult situations
  • Find healthy hobbies and practice self-care
  • Set time aside for your personal relationships

Coping with diagnosis as a child

Most people with SMA are diagnosed during infancy before they are aware of the diagnosis. Infants are establishing trust and security at this age. Parents’ presence during procedures and hospitalizations can help them adjust.4

Children with type 2 or 3 SMA are often diagnosed with SMA as toddlers or young children. Toddlers may be aware of their condition but may not understand it. They may need reassurance that SMA is not their fault. Distractions through games, movies, and toys can help toddlers cope.4

Children and teens better understand SMA and the needed treatments. They tend to be focused on social acceptance, finding their identity, and becoming independent. Diagnosis with SMA affects these aspects. It can cause emotions like:4

  • Uncertainty and fear about the future
  • Anxiety about depending on others and losing privacy
  • Sadness because of an inability to participate in activities they enjoy

These emotions are normal. Some ways to help children with SMA cope include:2-4

  • Maintaining optimism about their independence and participation in activities
  • Encouraging them to ask doctors questions
  • Giving them tasks to achieve independently
  • Finding social and physical activities for them to participate in
  • Encouraging them to keep in touch with friends and relatives
  • Establishing structure and routine
  • Joining an SMA support group
  • Talking to a therapist or counselor

Coping with diagnosis as an adult

People with type 4 SMA are often diagnosed during early adulthood. Receiving a diagnosis of type 4 SMA can take a long time after symptoms begin. This is because symptoms of muscle weakness are similar to many other adult-onset neuromuscular conditions. Waiting for appointments, test results, and a diagnosis can be very stressful.5

After receiving a diagnosis of SMA, adults may experience many emotions. Learning to live with the condition can have a large impact on you and your family. Even though type 4 SMA is usually mild, common concerns often include:5

  • Losing movement and mobility
  • Living and working with pain, fatigue, and other symptoms
  • Affording medical care
  • Other family members having SMA, especially future children

Talk to your healthcare team about these concerns. Occupational therapists can help reduce the impact of SMA on your daily life. Genetic counselors can help determine the risk of other family members having SMA. A therapist or counselor can help suggest ways to cope with these challenges.5