Word On Dystonia

Our thanks to the Dystonia Society for their contribution to our report. To find out more about the charity's work , click here to visit their website.

Dystonia is a general term that is used to describe a range of movement disorders that cause involuntary muscle spasms and contractions (tightening). The spasms and contractions that are associated with dystonia can cause the affected body parts to experience repetitive movements and to take on unusual and awkward postures.

It is thought to be a neurological condition - i.e. caused by underlying problems with the nervous system and brain. In most cases though, other functions of the brain, such as intelligence, memory, and language are unaffected.

Prevalence: It is estimated that there are 38,000 people in the UK who are affected by dystonia. It can affect people of all ages, including children. However, most commonly, the symptoms begin when a person is between 40-60 years of age.

Primary dystonia is a term that is used to describe cases where dystonia is the only symptom, and there is no evidence of any other associated neurological disease or damage.

Secondary dystonia describes cases where it arises as a symptom of an underlying neurological, or genetic condition, or from damage to the brain and/or nervous system. Some common causes of secondary dystonia include Stroke, Brain injury, brain infection or Parkinson Disease.

These are the main ways that dystonia can affect the body:

• focal dystonia - affecting a single body part, such as the hand or the eyes
• segmental dystonia - affecting two, or more, regions of the body that are connected to each other
• multifocal dystonia - affecting two, or more, regions of the body that are not connected to each other
• generalised dystonia - affecting both legs and other regions of the body (usually one arm or both arms) hemidystona - affecting half of the entire body.
• Early-onset dystonia is a term that is used to describe cases of dystonia where the symptoms begin in childhood, or early adulthood (usually between 5-30 years of age). Usually beginning in a leg, or arm, before often spreading to other limbs and/or the torso (the upper part of the body excluding the head and limbs).
• Late onset dystonia  describes cases of dystonia when symptoms begin in middle age, usually between 40-60 years old. In most cases symptoms begin the neck, the head or one of the arms, and usually do not progress any further.

While the condition is not life-threatening it is also incurable. Many people with primary dystonia are able to control, or at least reduce the severity of their symptoms, with treatment.

Treatment options for dystonia include medication, physical therapy and surgery.

The outlook for cases of secondary dystonia depends on the corresponding outlook of the underlying condition. People who have experienced a stroke can sometimes experience full remission from the symptoms of dystonia while people with Parkinson’s disease are likely to experience symptoms of dystonia for the rest of their life.

Listen to this weeks radio report