Spinal muscular atrophy (SMA) is the name given to a collection of rare genetic disorders that cause muscles to weaken and atrophy.
SMA is a lifelong condition. There is no cure for SMA, but there are medications that can help slow the progression of the disease. Physical and occupational therapy, as well as the use of supportive and assistive devices, can also help maintain function and quality of life.
In addition to addressing the physical challenges of living with SMA, treatment should also focus on the mental and emotional impact of the disorder. Though it affects the nervous system, SMA does not affect the brain development or cognitive ability. Because of this, people with SMA are often very aware of their physical limitations and how their life would be different without the disorder. They may also feel like they are a burden to those who care for them.
SMA is a different experience for everyone. People are diagnosed at different ages, experience different symptoms, and the severity of the condition will vary from one person to the next. Likewise, the way it affects mental and emotional health varies from person to person—and the ways that SMA impacts these aspects of a person’s wellbeing may change over the course of a person’s life. This is one of the reasons to make mental and emotional health an ongoing focus of treatment.
Strategies for focusing on mental health
The following strategies may help you identify how SMA impacts your wellbeing, determine what you need from treatment, and feel a greater sense of control.
- Take an active role in treatment. Taking an active role in your healthcare can give you a greater sense of control. Each time you meet with your healthcare providers, be prepared ahead of time. Work to establish goals you want to reach with your treatment plan.
- Work with a mental health practitioner. A therapist or counselor can offer guidance and strategies for coping with the mental and emotional struggles of SMA.
- Participate in a support group. The only people who know what it is like to live with SMA are other people who have SMA. Support groups offer a chance to connect with others and share experiences, frustrations, advice, and support.
- Keep a journal. Documenting your experience can help you define the specific challenges you face and better understand your experience.
- Make time for what you enjoy. Living with a chronic health condition can feel all encompassing. Do not underestimate the importance of the things in life that make you happy.
Define what’s important
The most important thing to remember is that you know what you are looking for in life. Advocate for yourself by asking questions and bringing up concerns. Make a list of goals you wish to achieve. Connect with people who understand your struggles and your hopes. Make sure your treatment plan focuses on your mental and emotional health as well as your physical health.
Sources: National Institute of Neurological Disorders and Stroke. "Spinal Muscular Atrophy Fact Sheet." Muscular Dystrophy Association. "Spinal Muscular Atrophy." MedlinePlus. "Spinal Muscular Atrophy." Cure SMA Care Series Booklet. "Caring for Your Emotional Health." Esther Th Kruitwagen‐Van Reenen, Renske I. Wadman, et al. "Correlates of health related quality of life in adult patients with spinal muscular atrophy." Muscle & Nerve, 2016. Vol. 54,, No. 5. SMA News Today. "Spinal Muscular Atrophy: Psychological Support."
