Dystonia: The facts

Dystonia is a neurological movement disorder that is estimated to affect at least 100,000 people in the UK.

It presents with uncontrollable muscle spasms triggered by incorrect signals from the brain, which can be painful. Dystonia can affect any region of the body including the eyelids, face, jaw, vocal cords, torso, limbs, hands and feet. It presents differently depending on the region of the body affected and each type has its own clinical name. Dystonia can also affect people at different times in their lives, starting in adult life or childhood.

It is usually a lifelong condition, however it is not usually life limiting. While there is currently no cure, several treatment options are available that can help relieve the symptoms and scientists around the world are actively pursuing research toward new therapies.

Dystonia can be an isolating condition. It can be scary not knowing what the diagnosis means, not only to your life but also how it might affect your friends and family. While the community is large, it is also regionally diverse, and this can lead to people feeling unsure and alone. The ‘Reach Out, Reach All’ campaign aims to bring the dystonia community together through animation, podcasts, and webinars.

As a charity, we want to share real life stories navigated by people with the condition to give hope and offer practical tips to help. We are looking to combat the social isolation that is so much a part of the condition. Dystonia UK has a wide range of informative resources to help those closely affected by the condition.

Podcasts

The ‘Dystonia Matters Podcast’ is a place where people can share their stories in their own words with no constraints. Listen to our first podcast series as our guests discuss dystonia and mental health, working with dystonia and awareness raising amongst other topics.

Listen now! www.dystonia.org.uk/ dmpodcast

Animations

‘Dystonia Animated’ is a series of short animations focusing on “What is dystonia?” in children and how the diagnosis affects their lives. With help from families and young people with dystonia, we have now created two episodes. The first explains dystonia in a format children and young people can relate to and the second episode focuses on the journey of diagnosis with a visit to the hospital.

Watch our first two episodes: www. dystonia.org.uk/dystonia-animated

Webinars

Over the last year we have hosted seven webinars and invited a host of specialist speakers such as Dan Lumsden (Consultant Paediatric Neurologist) and Jon Ellenbogen (Consultant Neurosurgeon). Each speaker takes the time to answer questions from our community and provide valuable information.

Catch up with all our webinars: www.dystonia.org.uk/webinars

‘Dystonia Around The World’ is back!! We are so excited to be bringing back this hugely popular one of a kind fully inclusive virtual event!

Join Dystonia UK this summer and help us raise awareness of dystonia as we virtually travel 25,000 miles around the world whilst raising £25,000. This year we will be jetting off from London in August with our London Marathon runners bringing us back home on the 2nd of October.

‘Dystonia Around The World’ was created to make sure everyone can take part, so every 10 minutes of any activity equals to 1 mile travelled. How you decide to complete your miles is up to you! Dust your trainers off, put your ballet shoes on, get your oven warmed up and your orienteering map ready to start collecting your miles!

How can I get involved?

Head over to dystoniaaround theworld.org to set up your own fundraising page

• Join on your own or set up a team page (share the fun with friends and family).

• Tell your story, create your own profile picture, and write your first blog post!

• Connect Strava to automatically upload your miles.

• Record your miles or minutes – remember every 10 minutes of any activity = 1 mile travelled.

Any questions, please email fundraising@dystonia.org.uk