Infomation about ADDER

Action for Dystonia, Diagnosis, Education & Research

A.D.D.E.R.

	Patrons:	Denise Robertson
		Dr Miriam Stoppard
		Vicki Archer

A	ction means 'doing something for a particular purpose' or 'movement during some physical activity' or 'something done on a particular occasion' or 'the way in which something operates or works'.
D	ystonia is a little known neurological condition affecting the central nervous system and consists of a group of related movement disorders, characterised by involuntary and prolonged spasms of muscle contraction.
D	iagnosis means 'the discovery and identification of diseases from the examination of symptoms'. Many people with Dystonia have remained undiagnosed for many years.
E	ducation means 'the act or process of acquiring knowledge' or 'the knowledge or training acquired by this process' or 'the act or process of imparting knowledge, especially at a school, college, or university' or 'the theory of teaching and learning'
R	esearch means 'the systematic investigation to establish facts or collect information on a subject'. Research in the North East of England into Dystonia has been full-time and on-going for the past 12 years.

Dystonia is a little known neurological condition affecting the central nervous system and consists of a group of related movement disorders, characterised by involuntary and often very painful and prolonged spasms of muscle contractions. Recent medical developments means it is now treatable, although it is not yet curable. Different medications can be used but the majority of people now opt for regular injections of Botulinum Toxin which weakens those muscles in spasm thus giving temporary relief, usually lasting about 12 weeks.

There are different names used for dystonia as it affects different parts of the body, eg :-

	Blepharospasm affects the eyelids causing blinking and closure.
	Spasmodic Torticollis affects the neck causing twisting / turning.
	Writer's Cramp affects the hands, fingers wrist or arm.
	Oromandibular Dystonia affects the jaw, mouth and tongue.
	Hemi-Facial spasm affects one side of the face and one eye.
	Hemi-Dystonia affects an arm and leg on one side of the body.
	Generalised Dystonia affects the whole body.

ADDER covers the entire country but has its roots in the North East of England where it covers Northumberland, Tyne & Wear, Co. Durham and Cleveland and Cumbria. Through a member's current research, working with the Medical Profession we have established a database of over 1700 people with dystonia throughout the North East and Cumbria since we started our awareness raising campaigns in 1993.

There are currently a number of different groups being established on Tyneside, Teesside, Durham, Darlington, Sunderland and Cumbria. The groups are run entirely by people with dystonia or who have family members with dystonia and are supported by 12 member volunteer Management Committee who administer the organisation.

Research based on the local hospitals has proven that dystonia is the 3rd most prevalent movement disorder after Parkinson's Disease and Benign Essential Tremor and more prevalent than other better known diseases of the central nervous system such as Motor Neurone Disease.