Frequently Asked Questions


What is dystonia?
Dystonia is a neurological movement disorder characterised by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures.


What part of body does dystonia affect?
Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords. Although there are different names to describe the various forms of dystonia, usually based on the affected body or cause of dystonia, all types fall under the general heading of “dystonia.”


What causes dystonia?
At this time it is unknown what exactly causes dystonia. Researchers believe dystonia is due to abnormal functioning of the basal ganglia, which are deep brain structures involved with the control of movement. The basal ganglia assist in initiating and regulating movement.


Who gets dystonia?
Dystonia does not discriminate. Anyone, regardless of race, age, or ethnicity, can manifest symptoms of dystonia.


How many people in Ireland are affected by dystonia?
It is the third most common movement disorder after Parkinson’s disease and Tremor, affecting an estimated 3,000 people in Ireland.


Is dystonia a genetic disorder?
Yes and no. At present researchers have recognised multiple forms of inheritable dystonia and have identified at least thirteen genes or chromosomal locations responsible for the various manifestations. Also, certain forms of dystonia are secondary resulting from an apparent outside factors and attributed to a specific cause such as exposure to certain medications, trauma, toxins, infections, or stroke.


Is there are cure for dystonia?
At this time there is no cure for dystonia, but treatments are available. Research continues to better understand the cause of dystonia.


Can you die from dystonia?
No, dystonia does not shorten life expectancy or result in death. In rare cases complications may arise secondary to dystonia which can cause serious medical problems, however this is rare.


How is dystonia treated?
The approach for treatment of dystonia may be three-tiered: oral medications, botulinum toxin injections, and surgery. These therapies may be used in alone or in combination.


Are medications used to treat dystonia?
Yes, several possible categories of medications used in the treatment of dystonia include anticholinergics, benzodiazepines, baclofen, and dopaminergic.


How do botulium toxin injections work?
Botulinum toxin is a therapeutic muscle-relaxing agent that helps reduce the involuntary contractions characteristic of dystonia. It is injected into specific muscles where it acts to weaken muscle activity sufficiently to reduce a spasm but not enough to cause paralysis.


How do I find a healthcare professional who specialises in dystonia?
Finding a Healthcare professional who specialises in dystonia is essential for proper treatment and care. Dystonia Ireland can help refer you to a neurologist.


How do I find support in dealing with dystonia?
Dystonia Ireland provides a support system including a helpline – (01) 492 2514 and a support group in Dublin. In addition various on-line resources are available including bulletin boards and chat rooms.