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

Join our team

We are looking for a community fundraiser to join our busy and friendly team. Part Time 1 year contract (21 Hours Per Week) in London. Up to £27,000 p.a. pro-rated and dependent on skills and experience. This exciting opportunity will be the first point of contact for new and existing donors and supporters, helping us to build important funding relationships across our wide range of supporters.
Research study now recruiting

Research study now recruiting adult and paediatric patients who have a DBS implant for primary dystonia
Cambridgeshire DS Group meeting 08 June 2019

Local support group meeting. Annual visit to Cambridge Botanic Garden.
PressOp™

A team of researchers at the Oxford Eye Hospital, based at John Radcliffe Hospital, have created a device designed to help individuals with Blepharospasm.

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.
Hemifacial spasm

Hemifacial spasm causes the muscles on one side of the face to contract. In its mildest form this may cause no more than a slight inconvenience, although the symptoms may still be disfiguring and socially embarrassing. In more severe cases, the contractions may interfere with vision, since the other eye is usually unaffected, it rarely causes loss of sight.