Spinal muscular atrophy - Treating spinal muscular atrophy

There is currently no cure for spinal muscular atrophy (SMA), but treatment can help improve the lives of people with the condition.

As well as being cared for by doctors and nurses, a number of other healthcare professionals are often involved in treatment for SMA. These can include physiotherapists, occupational therapists, and speech and language therapists.

Some of the methods used to help manage SMA are outlined below.

Exercise

For someone with SMA, exercise is very important for maintaining circulation, preventing joint stiffness and improving flexibility and range of movement.

The amount of exercise that someone with SMA is able to do will largely depend on the severity of their condition, but most healthcare professionals recommend people with SMA should do as much exercise as they are comfortable with.

Your occupational therapist or physiotherapist should be able to help design an exercise routine to help maintain joint mobility, prevent contractures (shortening of the muscles) and maintain muscle strength.

The exercises may incorporate elements of hydrotherapy (exercises in water) and games for young children.

Assistive equipment

If someone with SMA has difficulty moving, an occupational therapist will be able to offer advice and support.

For example, they can provide advice about equipment, such as walking frames and motorised wheelchairs. For more information, see practical support for carers.

Nutrition and feeding

It's important for people with SMA, especially children, to get appropriate nutrition to avoid problems like dehydration and ensure healthy development. However, this can be difficult because some people with SMA have problems feeding and swallowing.

A nutritionist can offer advice about diet, such as which formulas to use for babies with SMA.

However, if feeding and swallowing problems are severe, a feeding tube may be required. Several different types of tube may be used, such as a tube that is attached directly to the stomach (gastrostomy tube) or a tube passed into the stomach through the nose (nasogastric tube). 

Breathing support

Many people with SMA experience potentially fatal breathing problems caused by a weakening of the respiratory muscles, but there are a number of treatments which can help reduce this risk.

Breathing exercises are sometimes used to help reduce the risk of problems developing from respiratory tract infections and improve difficulties coughing.

In more severe cases, breathing may need to be assisted using a special machine that supplies air to the lungs through a mask or tube.

A special suction machine may also be used to help with any difficulties clearing the throat. This involves passing a thin, plastic tube to the back of the throat to suck away any mucus.

For people with SMA – as well as those in frequent contact with someone who has SMA – immunisations against respiratory tract infections, such as flu and pneumonia, are sometimes recommended due to the risk of serious complications.

Spine problems

For children with SMA, the risk of developing a sideways curve in the spine (scoliosis) is high due to the progressive weakness in the muscles that support the spine. There are various treatments for scoliosis in children, including back braces and surgery.

A specially made back brace can be used to help support the back and encourage the spine to grow correctly. However, this cannot correct the curve.

Spinal fusion is the only way to correct the problem permanently. This is where the spine is straightened using metal hooks and rods, before being fused into place using bone grafts.

Read more about treating scoliosis in children.