College Surgery Partnership

Tel: 01884 831300

Opening Times: 8.30am-6.30pm

Culm Valley Integrated Centre For Health, Willand Rd, Cullompton, Devon, EX15 1FE

Spinal muscular atrophy

Treatment

It's not currently possible to cure spinal muscular atrophy (SMA), but research is ongoing to find new treatments.

Treatment and support is available to manage the symptoms and help people with the condition have the best possible quality of life.

A team of different healthcare professionals will be involved in your or your child's care. They'll help come up with a care plan outlining the support and treatments you may need.

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).

Breathing help

There are several treatments for the breathing problems that can affect people with SMA.

These include:

  • 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

You may be advised to have vaccinations against flu and pneumonia to reduce your risk of becoming seriously ill from these infections.

Assistive equipment

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.

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:


Occupational therapy - Video