Feeding and diet help
It's important for people with SMA, especially children, to get the right nutrients. This will help with healthy growth and development.
A dietitian can offer advice about feeding and diet.
If you or your child has difficulty feeding or swallowing, a feeding tube may sometimes be needed.
Several types of tube can be used, such as a tube attached directly to the stomach through the skin of the tummy (gastrostomy tube), or a tube passed through the nose and down the throat (nasogastric tube).
There are several treatments for the breathing problems that can affect people with SMA.
- breathing exercises to strengthen the breathing muscles and make coughing easier
- a suction machine to help clear the throat if needed – this involves passing a thin, plastic tube to the back of the throat to suck away any mucus
- in more severe cases, a special machine that provides air through a mask or tube
If you or your child have difficulty moving, an occupational therapist or physiotherapist can provide advice and support.
For example, they can advise you about things such as:
- mobility equipment – including walking frames and wheelchairs
- supports for the arms or legs (splints or braces)
- shoe inserts that make walking easier (orthotics)
Find out more about getting the right care equipment.
The Spinal Muscular Atrophy UK charity also has more advice about day-to-day living with SMA
Exercises and stretches
Exercises and stretches can help maintain strength and stop joints becoming stiff.
A physiotherapist can suggest some exercises to try.
The amount of exercise you or your child can do will depend on your condition, but it's best to try to stay as active as possible.
Treatments for spine problems
Some children with SMA develop an unusually curved spine (scoliosis).
Treatments for this include:
- a specially made back brace to help support the back and encourage the spine to grow correctly
- spinal surgery – where the spine is straightened using metal hooks and rods, before being fused into place with pieces of bone
Read more about treatments for scoliosis in children.
Research into new treatments
Research is being carried out into possible new treatments for SMA.
You can ask your medical team about ongoing clinical trials into new treatments. You can also check the database of clinical trials for SMA to see what research is happening at the moment.
Previous research has suggested a new medicine called nusinersen (Spinraza) can help some people with SMA.
It was recently approved in the US and by the European Medicines Agency, but will be assessed by the National Institute for Health and Care Excellence (NICE) before it can be made routinely available in England.
For more information, see:
- Spinal Muscular Atrophy UK: nusinersen