Who we are

The Dystonia Society was established in 1983 by a small group of people affected by dystonia, and the aims and mission of those original founders are the core of our work today.

Our mission is a world without dystonia

To achieve this mission:

We aim to support and advocate for people living with the impact of dystonia to ensure they experience the best quality of life for all of their life whilst we drive forward towards critically needed treatments and ultimately a cure.

We do this by:

raising awareness of all forms of the debilitating set of conditions known as dystonia,
by supporting and advocating for those affected by a diagnosis of dystonia through our support and advocacy services and local support group network,
by facilitating research into critical advances in treatments and ultimately the search for a cure.

The Dystonia Society was formally registered as a charity (no. 1062595) in 1984 and also as a company limited by guarantee (no. 3309777). The Board of Trustees are elected by the membership of the charity and the Society has a Staff Team to carry out the day to day work of the organisation.

Latest

Members only
London, London SW & Surrey DS Group meeting 19 January 2019

New Year meal
London Dystonia Society Support Group Christmas Carol Service

Christmas Carol Service at St George's Church, London Tuesday 11th December 2018
Grand Draw 2018

Here is your chance to win £1000 and support the Dystonia Society too!

Blinking and eye problems

Most abnormal blinking or twitching of the eye clears up quickly - within a few hours of when the symptoms appear. If the symptoms do not go away one possible cause is eye dystonia.
More detail on tremor

Many people with dystonia experience head shake especially if the dystonia is affecting their neck. People often ask us about the difference between head shaking caused by essential tremor and that caused by dystonia. In this article Dr Marie-Helene Marion explains what the differences are and how neurologists tell if it is dystonia or not.
Foot dystonia

Foot dystonia is uncontrollable and often painful muscle contractions in the foot which causes a twisting or turning in of the foot. Foot dystonia is believed to be caused by incorrect messages from the brain to the muscles in the foot or lower leg.
Tremor

Tremor is an uncontrollable shaking or oscillation of a part of the body. Dystonic tremor is a type of tremor which occurs in conjunction with dystonia.
Oromandibular dystonia

Mouth, tongue or jaw dystonia (the medical term is Oromandibular dystonia) is characterised by forceful contractions of the face, jaw or tongue. It can cause difficulty opening or closing the mouth, often affecting chewing and speech.
What is dystonia?

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways. Unfortunately there is not yet a cure.
Blepharospasm

Eye dystonia (the medical term is Blepharospasm) is uncontrollable and often painful muscle contractions around the eye. Symptoms of eye dystonia may include excessive blinking and involuntary closure of the eyelids.
Neck dystonia

Neck dystonia (the medical name is cervical dystonia, or sometimes spasmodic torticollis) is uncontrollable and often painful muscle contractions in the neck which cause awkward postures and discomfort. The head generally pulls to one side, backwards or forwards.
The role of muscles in neck dystonia

The purpose of this article is to give a brief explanation of how some of the muscles in the neck can cause the abnormal movements and positions seen in neck dystonia.
Botulinum toxin injection

Botulinum toxin injections are used to reduce the excess muscle activity caused by dystonia. The injection enables the botulinum toxin to be targeted directly into the muscles affected by dystonia. The toxin has an effect on the nerves at their junction with the muscles.