The Dystonia Society is a charity which seeks to support those affected by the neurological movement condition known as dystonia. Dystonia Awareness Week runs from 2–10 May 2015 and seeks to raise the profile of the condition and raise funds.
Dystonia is a condition thought to be due to a problem with the basal ganglia area of the brain. It leads to involuntary and unwanted muscle spasms, causing abnormal movements and postures in the affected parts of the body. It is estimated to affect at least 70,000 people in the UK. There are a number of different forms of dystonia. The condition can affect specific parts of the body such as the eyes, mouth, neck and feet or can be more generalised in nature.
In the vast majority of cases, where the onset of symptoms is in adulthood, the cause of the condition will be unclear. In a minority of cases, a stroke or tumour may lead to dystonia and some drugs may also lead to symptoms of the condition. Where the onset of symptoms occurs in children, the dystonia will be secondary to another condition, very often cerebral palsy, in a significant number of cases.
Although there are many causes of cerebral palsy, when this condition arises because a fetus has suffered an acute period of profound asphyxia - a lack of oxygen - during the course of delivery, a form of cerebral palsy known as dystonic cerebral palsy may result. The lack of oxygen effectively results in damage to the areas of the brain with a high oxygen requirement, of which the basal ganglia is one.
We have acted on behalf of many children who have unfortunately sustained hypoxic brain injuries leading to dystonic cerebral palsy. This condition causes mobility problems which can range from mild to very debilitating if they are at the severe end of the spectrum and potentially affect mobility, function, feeding and speech.
Treatment can include medication as well as therapies such as physiotherapy, occupational therapy and speech and language therapy. These are all aimed at optimising function and reducing discomfort.