As every individual with SMA will experience symptoms
differently, there are many aspects to providing care for
individuals with SMA.
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Comprehensive care
Effective SMA management requires the participation of multiple disciplines and the coordination of many different aspects of care. Comprehensive care generally refers to procedures that address both acute problems and the day-to-day management of the individual’s medical needs.
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A multidisciplinary care team
A team of healthcare professionals who each focus on a different part of health and life is important for all people with SMA. For children with SMA, parents are key members of this team, and are encouraged to work closely with their child’s healthcare providers in determining a care team that works best for them. The care team for adults with SMA may look different, but the goal is the same: to provide care that works best for the individual.
Care team members
Examples of potential care members are included in the link below. The members of a care team vary based on individual needs, and can include healthcare professionals who are not listed below.
Respiratory care is an important concern when it comes to SMA, especially for children with SMA types 1 and 2, as muscle weakness can cause difficulty breathing and coughing, increasing the risk of infection. Noninvasive techniques can be used to aid breathing and coughing, such as using special equipment like ventilators, BiPAP machines, and cough assist devices at home.
Nutrition and diet
Individuals with SMA, particularly SMA type 1, may develop muscle weakness which affects their ability to chew and swallow. Healthcare providers may suggest a short or long-term feeding tube for individuals with swallowing dysfunction or feeding difficulties.
Orthopaedic care
Scoliosis (curvature of the spine) is a common problem found in individuals with SMA, particularly SMA types 1 and 2, due to muscle weakness.
An orthopaedic surgeon and/or specialist may recommend postural support (bracing) or surgery for scoliosis.
Physiotherapy
Physiotherapy is an important form of treatment for individuals with SMA. Exercises are used to help increase flexibility and overall function, while the use of a stander can also be beneficial to improve bone strength and maintain flexibility in hips, knees and ankles.
2.Mercuri E et al. Neuromuscul Disord 2018;28(2): 103-115.
3.Rad N et al. Muscle Nerve 2022;65(5): 498-507.
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SMA Questions
Understanding SMA can mean asking a lot of questions. We have starter questions for information about SMA, and suggestions for questions you might like to ask your doctor to understand more about SMA.
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How can SMA affect daily functions?
SMA can affect individuals differently, depending on the type and severity of SMA. Changes to motor function over time can affect an individual’s ability to sit or walk unassisted, fine motor skills such as using a pen, and in severe cases, the ability to eat and swallow.
How does SMA change over time?
SMA is a progressive neuromuscular condition. In the absence of survival motor neuron (SMN) protein, motor neurons deteriorate and muscles atrophy. Progressive muscle weakness can lead to changes in motor function, such as losing the ability to sit unassisted. Care in SMA is focused on maintaining motor function and health among individuals with SMA.
1. D'Amico A et al. Spinal muscular atrophy. Orphanet J Rare Dis. 2011;6:71.
2. Mercuri E et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord. 2018;28(2):103-115.
3. Finkel RS et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord. 2018;28(3):197-207.
Can I exercise with SMA?
Physiotherapy can be an important part of managing SMA. A physiotherapist will determine an individual’s ability and functional level, and then help choose exercises that are suitable and safe for the individual.
Do I have to see a specialist for SMA?
SMA is diagnosed by a paediatric neurologist in children, and an adult neurologist in adults. Whether an individual with SMA will need to see additional specialists depends on the type and level of care they may require. Individuals with SMA may have a multidisciplinary care team that includes, for example: a neurologist, a respiratory specialist, a dietitian and/or a nutritionist, a physiotherapist, and an orthopaedic surgeon.
