What is Dystonia? - Fact sheet

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What is Dystonia?

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Dystonia Defined
Dystonia is a movement disorder that causes the muscles in the body to contract or spasm involuntarily. These muscle ccontractions force the body into twisting, repetitive movements, and abnormal postures.

Multiple parts of the body can be affected or just one such as legs, arms, neck, face, eyes, and vocal cords

Symptoms are usually chronic

Causes varying degrees of disability and pain, from mild to severe

Dystonia can be genetic or caused by trauma, medications, or other medical conditions

Dystonia Diagnosed

Dystonia is estimated to affect 300,000 individuals in North America--100,000 of them children. However, awareness and proper diagnosis are extremely limited.

It is common for a patient to undergo numerous physician visits over the course of years to achieve correct diagnosis.

There is no singular diagnostic test for dystonia. A neurologist who specializes in movement disorders can diagnose dystonia by observing symptoms.

Dystonia Treatment

There is no cure for dystonia.

There is no single treatment or therapy that is appropriate for all cases of dystonia. Treatment may include:

-Oral medication
-Botulinum toxin injections ("Botox")
-Brain Surgery

Medical therapies attempt to suppress or reduce muscle contractions but do not dimish or eradicate the underlying disease.

Dystonia Impacts Quality of Life

Dystonia can interfere with nearly all aspects of a person's life including daily functions such as walking, sitting, sleeping, eating, and talking.

Appearance of awkward body postures and uncontrollable movements often make patients reluctant to go out in public or withdraw from family and friends for fear of being misunderstood or mistreated.

Dystonia can have an enormous impact on families, spouses, are caregivers who support severely disabled patients.

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