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  • whole-body-dystonia
  1. About dystonia
  2. Types of dystonia
  3. Whole body dystonia

Whole body dystonia

Other names: Generalised dystonia / Early-onset dystonia / Primary early-onset generalised dystonia / DYT1 dystonia

Type: Generalised

Generalised dystonia is a neurological movement disorder characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements in the whole body. Typically, the condition starts in a limb and then ‘generalises’ to other areas. In most cases, symptoms progress and stabilise within a 5-year period.

Generalised dystonia can be:

  • inherited – a dystonia caused by genetic factors or;
  • acquired (secondary) – a dystonia that appears to have a specific cause such as drug reaction, brain injury, or as a symptom of another neurological or metabolic disorder or;
  • idiopathic – a dystonia with no known cause or clear cause

Generalised dystonia is usually diagnosed and treated by a neurologist specialising in movement disorders.

What are the symptoms?

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Symptoms of generalised dystonia include:

  • muscle spasms in the body
  • twisted postures of the limbs or torso
  • abnormal fixed postures of the limbs or torso
  • rapid jerking movements
  • unusual walking with bending and twisting of the torso
  • tremor
  • pain

Stress and anxiety are known to exacerbate the symptoms.

Published: 1st June, 2020

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Who does it affect?

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  • It is known as early-onset as it most often appears in late childhood / early teens.
  • There is 30% chance of developing generalised dystonia if you have inherited the DYT1 gene. If you reach the age of 30 without developing symptoms, there is a good chance they will never develop.

Published: 2nd June, 2020

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What are the causes?

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When generalised dystonia is inherited, the condition is caused by mutations in a specific gene. The gene abnormality causes a problem with the brain’s production of the chemical dopamine.

Generalised dystonia is sometimes caused by a fault in the DYT1 gene. There are a number of other genes which cause primary early-onset generalised dystonia including the DYT5 gene which causes a rare type of generalised dystonia highly responsive to treatment by dopamine called dopa-responsive dystonia.

If no genetic cause can be identified, the physician will explore if the dystonia is ‘acquired’. This may involve a MRI scan of the brain and testing for other rare conditions such as:

  • Wilson’s disease - a treatable genetic condition in which the body does not process copper properly or;
  • Neuronal brain iron accumulation syndrome (NBIA) – a genetic degenerative condition in which iron is deposited in the basal ganglia

In idiopathic generalised dystonia there is no detectable abnormality on any brain scans or investigations so it is uncertain why the dystonia has appeared.

Published: 3rd June, 2020

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What are the common treatments?

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  • Botulinum toxin injections
  • Oral medication
  • Deep brain stimulation
  • Physiotherapy

Published: 4th June, 2020

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How will it affect my life?

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You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond.

Published: 5th June, 2020

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You might also be interested in:

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Published: 6th June, 2020

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Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)


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