We currently have 6 members of the committee and 4 vacancies.
A.D.D.E.R. is run entirely by volunteers who are also committee members. The current committee have all served for several years and are very experienced, each one of us has a different role within A.D.D.E.R. but we all work together to continue to raise awareness of dystonia and provide support to those who need it.
If you are a member and interested in joining our committee please contact us at:
by post: A.D.D.E.R., Kibblesworth Millennium Centre, Grange Terrace, Kibblesworth, Gateshead, Tyne and Wear, NE11 0XN
OUR THREE MAIN AIMS ARE:
- 1. To advance the education of the public in relation to the sickness and distress caused by the neurological conditions known as Dystonia.
- 2. To promote the treatment of people with Dystonia and other related movement disorders and to offer support and welfare to patients, their carers and families.
- 3. To promote awareness and encourage research amongst the medical profession of the neurological conditions known as Dystonia.
IF YOU WOULD LIKE A COPY OF OUR CONSTITUTION PLEASE EMAIL OR WRITE TO US WITH YOUR REQUEST.
WHAT EXACTLY IS DYSTONIA?
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 prolonged, painful muscle contractions. Dystonia can affect virtually any part of the body and may be confined to just one area (focal dystonia) or extend to several different parts of the body (mulit-focal dystonia) or the whole body (generalised dystonia). Dystonia can be difficult to diagnose, since the symptoms are variable and can easily be confused with other types of illness. At least 1 in 2,000 people have been diagnosed with dystonia and this number is growing due to increased awareness of this condition. Dystonia is the most common neurological condition after Parkinson’s Disease. What are the Different Types of Dystonia?
There are different names for dystonia affecting different parts of the body:
- There are different names for dystonia affecting different parts of the body:
- Blepharospasm – affects the eyelids causing blinking, closure and functional blindness.
- Spasmodic Torticollis – affects the neck causing twisting, turning and/or jerking.
- Writer’s Cramp – affects the hands, fingers, wrist or arm.
- Spasmodic Dysphonia – affects the larynx and speech.
- Oromandibular Dystonia – affects the jaw, mouth and/or the tongue.
- Hemi-Facial Spasm – affects one side of the face and one eyelid.
- Hemi-Dystonia – affects an arm and leg on one side of the body. Segmental Dystonia – affects two or more connected parts of the body.
- Multi-Focal Dystonia – affects two or more non-connected parts of the body.
- Generalised Dystonia – affects the whole body.
- Myoclonic Dystonia – affects the body with sudden jerky movements.
- Paroxysmal Dystonia – affects the body with sudden dystonic postures.
- Dopa-Responsive Dystonia – affects the body but responds to dopamine.
At present, a range of treatment options is available which can help to relieve the symptoms. The treatment offered will depend upon the type of dystonia in question and it’s degree of severity. The main treatment options are botulinum toxin injections, drugs and deep brain stimulation.
IS THERE A CURE FOR DYSTONIA?
Unfortunately at the moment there is no cure for dystonia. However, if diagnosed and successfully managed with the correct treatment, the quality of life for people with the condition can be greatly improved.
WHO CAN HELP ME?
Action for Dystonia, Diagnosis, Education and Research (A.D.D.E.R.)
Kibblesworth Millennium Centre
Tel: 07765 743 656
email address: firstname.lastname@example.org