Dystonia musculorum deformans is commonly referred to as generalized dystonia or early-onset dystonia.

Dystonia in its many forms including generalized dystonia is a frequently misdiagnosed and little understood chronic neurological disorder. Dystonia is not fatal but may be quite painful. Abnormal signals sent out by the brain block messages to muscles. This causes involuntary muscular spasms that may twist a person's body into abnormal positions. Neurologists with an interest in movement disorders are able to offer an appropriate clinical diagnosis followed by a treatment plan.

Generalized dystonia may present as more problematic to treat than other forms of dystonia. This type of dystonia frequently requires a combination of drugs suitable for the presenting symptoms. When favored treatment methods are no longer helpful in controlling symptoms the person may be referred for deep brain stimulation surgery. There is no guarantee of success resulting from this form of surgery. The risk of serious complications must be considered. Botulinum toxin injections are commonly and successfully used for treating symptoms of dystonia but may not be particularly helpful for the long term treatment of generalized dystonia.

Botulinum toxin injections into the overactive muscles is the safest and preferred drug therapy for most other forms of dystonia. Prolonged effect of the injections may be gained from physiotherapy, speech therapy and or other interventions recognized as beneficial for each person's need.

Appropriate support for people with dystonia and their families can be hard to find. It is through contact with others experiencing the same kinds of daily frustrations resulting from living with dystonia that individuals are able to feel normal. Talking to others who really do understand is a welcome relief!

If you would like to share your story or know more about dystonia, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you.

Sue Bayliss. Cairns, Australia.