Background
The Dystonia Society was first established by a small group of people who had various forms of dystonia, in 1983.
Its initial aims were to provide mutual support for those affected by dystonia, and to raise awareness of the condition, particularly among the medical profession, through education and the promotion of research. It first became a registered charity in 1984, and its principal aims and objectives have remained the same throughout the past twenty years.
Basic information
The Dystonia Society is a registered charity (number 1062595) and Company Limited by Guarantee (number 3309777). It is a membership organisation, and managed by a Board of Trustees who are elected by the membership at the Annual General Meeting each year. Currently there are eight Trustees, six of whom have one or more forms of dystonia, and the other three care for a family member with dystonia.
Offering support
As the Society’s membership has grown, individuals have come together locally around the UK to establish local support groups and contacts providing opportunities for people to meet, share experiences, provide mutual encouragement and support. Many branch meetings have speakers on various aspects of dystonia, its treatment, and related issues such as access to services, employment issues, benefits and mobility.
Through the central office, there is access to information about all aspects of dystonia and related issues, and a telephone support service. In addition, individual members around the UK offer to act as ‘local contacts’, offering telephone support to people who may be experiencing difficulties in coping with their dystonia.
In 2003, a support network for people affected by blepharospasm was set up in the South of England, and another for those with laryngeal dystonia was established in Yorkshire. Plans are being developed for other informal networks of members with particular types of dystonia.
Raising awareness
Although dystonia affects over 40,000 people in the UK, many people have never heard of it. We know that many people first consider their symptoms might indicate dystonia, after reading a story in a magazine or newspaper, or seeing something on TV, that shows someone with similar difficulties.
In addition, because most GPs will rarely meet a patient with dystonia, and because it can appear very differently in each patient, some doctors do not readily recognize the condition, and may consider the symptoms to be an indication of stress, or another muscular problem. It is not uncommon for people with dystonia to be referred for counselling (to relieve stress) or for physical therapies (to ease mucles cramps or straighten distorted posture), rather than for a neurological opinion.
The Dystonia Society seeks to improve the awareness of dystonia among the general public, by working with the media to place personal case stories about people living with dystonia, and by providing accurate information about all aspects of the condition.
We also try to increase the understanding of dystonia as a neurological condition among medical and other professionals.
An important part of this is the Jackie Deakin Essay Competition which offers a cash prize for medical students who write an essay on any aspect of dystonia. In addition, our central support and information service responds to requests for information from professionals.