Treating spinal muscular atrophy

Treatment and support is available to help manage the symptoms of SMA and provide the best possible quality of life. It's not currently possible to treat the genetic faultthat causes SMA.

As well as doctors and nurses, a number of other healthcare professionals are often involved in treatment for SMA, including:

• Physiotherapy
• occupational therapists
• speech and language therapists

Some of the methods used to help managethe conditionare outlined below. Treatment can vary depending on the type of SMA.

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 someone with SMA is able to do depends on the severity of their condition, but most healthcare professionals recommend as much exercise as possible.

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

The exercises may incorporate elements of hydrotherapy, which involves exercising in water, and games for young children.

Assistive equipment

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

For example, they can provide advice about equipment, such as walking frames and powered wheelchairs .

Nutrition and feeding

It's important for people with SMA, especially children, to get the right nutrition to avoid problems such as dehydration and ensure healthy development.

But this can be difficult because some people have problems feeding and swallowing. A nutritionist can offer advice about diet, such as which formulas to use for babies with SMA.

A feeding tube may be required if feeding and swallowing problems are severe. Several different types of tube may be used, such as a tube 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 that 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 because of the risk of serious complications.

Spine problems

For children with SMA, the risk of developing a sideways curve in the spine (scoliosis) is high as a result of the progressive weakness in the muscles supporting the spine.

Scoliosismay be treated with physiotherapy and braces or with surgical intervention. Braces are usually used first to give stability while sitting. This allows people to use their hands and arms for daily activities such as eating and washing.They can provide control of the curve during growth until surgery is required.

There are several types of surgery for scoliosis, depending on your child's age. Younger children may be treated with growing rods, which allow the spine to grow while partially correcting the scoliosis.

Teenagers and young adults may be treated with a spinal fusion. This is where the spine is straightened using metal hooks and rods, before being fused into place using bone grafts. Spinal fusion is the only way to correct the problem permanently.

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Research into treatments

Research is currently being carried out into possible treatments for spinal muscular atrophy (SMA).

You can check the database of clinical trials for spinal muscular atrophy or read more general information about medical research and clinical trials .