There is currently no cure for spinal muscular atrophy (SMA), but research is under way and several clinical trials have been conducted recently.
Browse the available clinical trials and learn more about medical research and clinical trials.
Until an effective treatment for SMA can be found, the management of the condition currently focuses on relieving the symptoms and providing supportive care.
Some of the methods that are used to help manage SMA are outlined below.
Breathing
Many people with SMA experience breathing problems that are caused by a weakening of the respiratory muscles. Breathing-related problems are a common cause of death, particularly in children with types 0, I and II SMA.
In more mildly affected children, breathing exercises are used. These reduce the risk of chest infections, as well as helping to minimise symptoms if infections do develop.
More moderately affected children and adults with breathing difficulties can be given a special mask or mouthpiece to support their breathing, mainly at night and for as many hours a day as they need it. The mask or mouthpiece can usually be removed for eating, drinking, talking or breathing normally when possible.
Swallowing and feeding
Babies with SMA who are unable to suck or swallow are at risk of becoming dehydrated and poorly nourished. Not being able to swallow properly also increases the risk of choking by inhaling food and liquid.
If a baby with SMA is unable to swallow and is at risk of choking, they may need to be fed through a tube that is attached directly to their stomach. This is known as a gastrostomy tube. Some modern feeding systems allow the tube to be detached when it is not in use.
Physiotherapy
Due to the severe, progressive weakening of the proximal muscles (those closest to the centre of the body, such as shoulders, hips and back), it is likely that a person with SMA will find it difficult to move and support themselves.
Physiotherapy concentrates on problems that affect muscles, bones, the heart, the circulation and the lungs, and can be very useful for people with SMA.
For example, physiotherapy is often used to help improve a child’s posture and range of movement, as well as helping to slow the development of scoliosis (curvature of the spine).
Back brace and surgery
For children with SMA, the risk of developing scoliosis is high as a result of the progressive weakness in the muscles that support the spine. A specially made back brace, or corset, can be used to help support the back and encourage the spine to grow correctly.
However, using a back brace is not a permanent solution for spinal curvature. Spine-straightening surgery – also known as spinal fusion – is the only way to correct the problem permanently.
Spinal fusion involves fusing together the back bones of the spine in the correct position. If possible, most surgeons prefer to wait until after a child’s spine has finished growing before carrying out surgery.
Diet
There is little evidence to suggest that a particular diet is useful for people with SMA. However, as SMA is a condition that directly affects movement and mobility, it is important for someone with the condition to eat a balanced diet to maintain a healthy weight.
A nutritionist will be able to advise about the types of food that you should include in your diet, as well as providing useful advice about calories and portion size. A good nutritional plan should be balanced with an appropriate exercise programme.
Exercise
For someone with SMA, exercise is very important for maintaining circulation, preventing joint stiffness and improving flexibility and range of movement.
It is not entirely clear how much exercise someone with SMA should do, and further research is required.
Also, the amount of exercise that someone with SMA is able to do will largely depend on the severity of their condition and their level of mobility. Most healthcare professionals recommend that someone with SMA should do as much exercise as they are comfortable with.
Your occupational therapist or physiotherapist should be able to design an exercise routine that can be performed at home to help:
- maintain joint mobility
- prevent contractures (shortening of the muscles)
- maximise respiratory function
- maintain muscle strength to delay muscle wastage
Assistive equipment
An occupational therapist will also be able to offer advice and support to improve the independence and overall quality of life of someone with SMA.
For example, they will be able to provide help and advice about equipment to help with mobility, such as walking frames and motorised wheelchairs. For more information, see Carers Direct: practical support.
