Dystonia Awareness Week 2023

Wed 3rd May - Thu 11th May 2023

United Kingdom

Dystonia Awareness Week is supported by The Dystonia Society.

Dystonia is a condition in which incorrect signals from the brain causes muscles to pull on the body and spasm. Dystonia can be very painful to a person with this condition. Once symptoms of dystonia begin, they can become progressively worse; symptoms can worsen from up to 5 years since diagnosis.

Raising Awareness About The Types Of Dystonia

There are several types or subsets of dystonia which are defined  by areas of the body affected, the severity of symptoms shown or the cause of the symptoms.

Dystonia which affects more than one area of the body include generalized dystonia (most of the body including back and trunk), hemidystonia (only one side of the body is affected) and paraxysmal dystonia which affects part or all of the body in brief episodes. Dystonia can affect both children and adults (in the UK approximately 70,000 people have dystonia of which about 8,000 are children).

In adults, a common type of dystonia is focal dystonia which is limited to certain areas of the body. In children, dystonia is more likely to affect multiple areas of the body. There several subtypes of focal dystonia. Specific areas of the body affected include the eyes (eye dystonia), neck (neck dystonia) voice (voice dystonia), mouth tongue or jaw (known as oromandibular) or the hand (focal hand dystonia). Writer's cramp, which many people are familiar with, is a specific form of focal hand dystonia.

In some cases, dystonia can be triggered by certain medications; these are referred to as tardive dystonia.

Finally, functional dystonia is another type of dystonia in which a person displays some symptoms. Functional dystonia may be diagnosed when tests used to establish the cause of the symptoms prove negative.

Supporting Dystonia Awareness Week

The Dystonia Society is an organization which supports Dystonia Awareness Week. The Dystonia Society was founded in 1983; their aim is to promote awareness of dystonia, undertake research and support welfare initiatives. The Dystonia Society organizes various activities throughout Dystonia Awareness Week.

Their most prominent awareness activity is 'Tea Party For Dystonia', in which people are encouraged to host a tea party to raise awareness and funds. The Dystonia Society provide a fundraising pack which people can use during this event, or during other times of the year.

The awareness pack includes a print off poster used for advertising the event, tea party ideas (e.g. fancy dress, run a raffle), some quiz questions to help make the party more fun and a selection of recipes for cakes which people can bake and bring along to the party.

Organizers of the tea parties are encouraged to take photographs of the event and send them to the Dystonia Society so they can use them in other promotional activities and material to raise funds and awareness about this condition.

For more information visit the Dystonia Society website.