To support dystonia patients with information, advice about living with dystonia and networking opportunities
To increase awareness about dystonia – both among the medical community and the general public
To encourage and facilitate research, with the aim of seeking better treatments, prevention, a cure
Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Sometimes the symptoms are accompanied by dystonic tremor.
Unfortunately there is not yet a cure. However, in the vast majority of cases, dystonia does not shorten a person’s life span.
Treatments are available and most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks to help with social situations. Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.
Research has identified that the major role of the basal ganglia is to balance excitation and inhibition (just like a pair of scales). However, in dystonia this delicate balance is not attained. It is not yet certain whether the problem is with the direct pathway, the indirect pathway or both. However, as dystonia appears to result from insufficient inhibition in the muscles, it may be that the indirect pathway is failing, resulting in impaired suppression of muscle activity. The lack of inhibition of antagonist or surrounding muscles ultimately causes the co-contraction or overflow phenomena seen in dystonia.
One area of focus has been to look at whether dystonia is caused by a shortage of the inhibitory neurotransmitter GABA. It seems plausible that a shortage of an inhibitory neurotransmitter such as GABA may play a role, since dystonia seems to be a failure of inhibition. At present this is a theory that remains unproven; however, one of the treatments for dystonia, which helps in some cases, is to prescribe medications that increase the quantity of GABA such as benzodiazepines, gabapentin or baclofen.
Courtesy of http://www.dystonia.org.uk/
- Generalised – most common in young patients
- Focal – starts in adulthood, affecting one or more parts of the body
The following members of the NZDPN are available to provide advice and support to others nearby and/or with their form of dystonia. The Area Contact Persons are listed both geographically and by type of dystonia. When contacting them by email please put ‘Dystonia’ in the subject line to minimise the risk that your message is treated as spam.
For information about a support group in your area please e-mail firstname.lastname@example.org
Location (North to South)
07 350 3120 / 021 293 8095
Barbara Murrell – email@example.com
Types of dystonia
Spasmodic Torticollis (Cervical Dystonia)
Dystonia Medical Research Foundation (DMRF)
The Dystonia Society
National Spasmodic Dysphonia Association (NSDA)
Benign Essential Blepharospasm Foundation (BEBRF)
Dystonia Network of Australia (DNA)
Number of People by Country Living with Dystonia