Self Help Support
Dystonia and its emotional offshoots affect every aspect of a person’s life – how we think, the way we act, and how we cope. By educating yourself with information, you have taken the first step in dealing with dystonia.
Many people are experiencing similar symptoms. Reassurance from family, friends, and others who have dystonia is beneficial. Sharing experiences, whether it is at support group meetings or on-line, offers encouragement, camaraderie, and the latest information about new treatments and medical advances.
Dystonia Ireland was founded in 1998 by patient Maria Hickey along with Medical Consultant Prof. Michael Hutchison, Consultant Neurologist at St. Vincents and Tallaght Hospitals.
The aims of Dystonia Ireland are:
- To encourage and promote the best methods of care, education and treatment of persons suffering from Dystonia.
- To increase awareness of Dystonia through information and publicity within the medical profession and among the general public, and to help gain a correct diagnosis of their condition.
- To offer welfare support and to help patients suffering from Dystonia and their families and carers come to terms with and manage their condition, and to obtain appropriate treatment wherever possible.
- To fund and research into Dystonia, to find out the causes of this distressing and sometimes disabling condition and to hopefully find a cure for it.
- To recruit, instruct, and train personnel necessary to provide services for persons suffering from Dystonia and to establish scholarships, grants, awards, and prizes tenable at any University College or Institution of Higher Learning to approved persons preparing for or engaged in works (whether research work or otherwise) relating to Dystonia, its causes, effect, prevention, treatment and cure.
- To provide literature to disseminate knowledge of Dystonia and of all assistance available through the Social Services.
- To initiate and foster the formation of local Support Groups in Ireland, to provide assistance and help of every description to families, relatives and friends of persons suffering with Dystonia.
Dystonia Ireland is a member of the Neurological Alliance of Ireland and Dystonia Europe It is a registered charity and a limited company. Current membership is over 700 and growing.
Dystonia Ireland is grateful for the close affiliation and support it has shared with the Dystonia Medical Research Foundation over the years to help increase awareness of dystonia in Ireland.
Prof Michael Hutchinson, BSc, MB, FRCP, FRCPI,
Prof Tim Lynch, MRCPI, MRCP (London),
Prof Mary King, FRCPI, FRCPCH,
Consultant Paediatric Neurologist
Mr Brian Kerr,
Football Association of Ireland
The Internet serves as a valuable resource to people with dystonia who would like to communicate with others who have the disorder. These “on-line” services act as a support network which are available 24 hours a day, seven days a week. There are various mechanisms of communication including bulletin boards and chat rooms.
Dystonia Bulletin Boards
Dystonia-related Bulletin Boards provides a forum to ask questions, seek advice, and just enjoy the company of others who are experiencing similar symptoms. In the bulletin board format, a person can post a message and others can respond to it. Archive and search functions of past postings are also available.
Specific bulletin boards are available for:
- Musicians with Dystonia
- Spasmodic Dysphonia
Local Area Support
Dystonia Ireland Helpline
One of the most vital aspects of Dystonia Ireland is its helpline – (01) 492 2514. All calls are answered as soon as possible. Leave daytime or an evening telephone number and your call will be returned as soon as possible. All queries are dealt with.
Local Support Groups
Currently, Dystonia Ireland has a Support Group in Dublin. Please contact us to learn about meetings and activities. We are currently undertaking the setting up of support groups throughout Ireland.
If you feel you would benefit, or you know some who would from a Support Group, let us know and we can work together to ensure that your locality has the best facilities available to those who have Dystonia. Also, we can assist if you would like to host an information evening on Dystonia and encourage those locally to set up an active Support Group.