My Sibling Has SMA

Siblings of people with spinal muscular atrophy (SMA) often help their parents with caregiving. This can impact your life in positive and negative ways. Talk to your parents or other family members if you are feeling frustrated or upset about your situation.

Siblings may become the main caregiver if parents are unable to provide care. This can be a rewarding experience but is often stressful. Taking steps to reduce stress is important to stay mentally and physically healthy.

How can I help my parents provide care?

If your sibling has SMA, your parents may be their main caregivers. They may spend a lot of their time helping your sibling with daily tasks. Your sibling may need help with:1

  • Getting dressed and changing
  • Eating
  • Bathing or showering
  • Moving around the house
  • Receiving treatments

You may be able to help your parents with many of these tasks. You can also help organize games and other enjoyable activities.2

Another way to help is to learn about SMA. This usually happens gradually as you grow up. Siblings may not be involved in conversations between parents and doctors. This may lead to misunderstandings that make you more worried. Ask your parents to explain what is happening with your sibling. Learning more about SMA can also help you notice symptoms and help your sibling.3,4

How does my sibling having SMA affect me?

Having a sibling or parent with SMA increases your risk of having or carrying SMA. Talk to your parents about getting genetic testing. They can make an appointment with a genetic counselor to discuss your risk. This is a doctor who specializes in diagnosing genetic disorders.2

Having a sibling with SMA also impacts other parts of your life. Many people report that having a sibling with SMA feels normal because it is all they know. But acknowledging how your life is affected can help you cope better.2

Having a sibling with SMA can have many positive impacts on your life, including:2,5,6

  • More family togetherness through caring involvement
  • More home-based activities
  • Closer relationship between siblings
  • More positive outlook, sympathy, and emotional maturity
  • Career choices that reflect skills of a caregiver

Negative emotions are also common among siblings of people with SMA, including:2,4,7

  • Disappointment about restrictions on activities
  • Feeling like they have to be perfect
  • Lack of attention from parents
  • Embarrassment about their sibling
  • Guilt about feeling jealousy, resentment, or embarrassment
  • Strain trying to balance personal life with their sibling’s needs
  • Fear of the future and grief

All of these feelings are normal. However, they can add stress and lead to feelings of anxiety and depression. This may affect social behaviors and cause mood changes. Talk to your parents, family members, friends, and doctors if you are feeling sad or angry. There are usually easy ways to make sure your needs are being met alongside your sibling’s needs.

What will happen if I become the main caregiver?

Sometimes, parents may not be able to serve as the main caregiver. This can happen for many reasons. For example, new SMA treatments are improving life expectancy. This means children with SMA may have a higher chance of outliving their parents.5

As your sibling’s main caregiver, you may spend most of your time helping them with daily activities. Some siblings choose to take on the main caregiver duties before they need to. Others may feel pressured to care for siblings if other family members cannot. Providing full-time care while developing your own personal life can be overwhelming. Feeling stressed and frustrated is normal.5,6

How can I cope with the stress of being a caregiver?

Studies have shown that caring for a sibling is linked to lower stress than caring for a spouse or child. But caregiver experiences vary widely. Your experience and stress level depend on the severity of your sibling’s SMA, economic and cultural background, and other personal factors.8

Caregiving for a sibling can place a large physical and emotional burden on you. Managing stress is important to keep you mentally and physically healthy. It can also ensure you continue to give your sibling the best possible care. Some ways siblings can cope with their caregiver duties include:2,9

  • Participate in other healthy activities and hobbies
  • Maintain a healthy diet and exercise routine
  • Focus on the present and on what you can control
  • Use humor to relieve tension
  • Find support outside your immediate family, such as friends, teachers, and support groups
  • Talk to your friends and ask them for help
  • Advocate and fundraise for SMA research
  • Talk to a therapist or counselor about ways to cope

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Written by: Matt Zajac | Last reviewed: August 2021