Dystonia : a comprehensive and longitudinal study of the epidemiological, social, economic and psychological implications of dystonia within the population of the North East of England

Abstract

Dystonia is a little known neurological disease of the central nervous system and consists of a group of related movement disorders, characterised by involuntary and prolonged spasms of muscle contraction. Although it is nearly 90 years since this neurological disorder was first named, relatively little research had been undertaken into dystonia, for the first 65 years and it was not until the mid 1970's that researchers started to look at the disorder. This particular programme of research has taken place exactly over a six year period, starting in May 1993, and relates to a large number of different areas of study. This research has proven that dystonia is far more prevalent than previously thought, it is next to Parkinson's Disease in degree of prevalence and is far more common than other better known neurological conditions, such as Motor Neurone Disease, and yet it remains largely unknown to most members of the medical profession and the general public at large. Dystonia has been historically extremely difficult to diagnosis and this meant it has been previously very difficult to obtain sufficient numbers for study, which in turn has created a number of significant social and economic consequencesw, hich has mainly meant that most cases of people with dystonia have remained undiagnosed or misdiagnosed for many years. This research was designed to measure the severity and prevalence of dystonia in the northern part of the UK, the implication the disease has had on the working life and environment of each patient and how that person is coping with the various personal, social and family relationships caused by the onset and potential gradual deterioration of the disorder, as well as measuring the quality of life of each patient during a number of different therapies. Although there has been research into other neurological disabilities, very little is known about the implications that dystonia can have on the affected person and their families. This is the first time that all types of dystonia have been studied and that certain related subjects have been specifically included. This research has been enormously helped by the tremendous expansion in the use of Botulinurn Toxin therapy and although an enormous amount of work has been completed and accomplished during this research programme, it should never be forgotten that the subjects of this thesis are real people and that the implications and results of this research have had, and will have, a tremendous impact on their lives and that of their families.