Dystonia signs, symptoms and how to get help in the UK and beyond

Dayna Ferdinandi

Director of Fundraising and Communications, Dystonia UK

Dystonia is a neurological movement disorder affecting over 100,000 people in the UK, yet so few have heard of it. We aim to change that.

What is dystonia?

Dystonia is a neurological movement disorder. However, there is so much more to this often misunderstood condition. Dystonia causes uncontrollable muscle spasms, triggered by incorrect signals from the brain. These spasms can be painful and debilitating. Dystonia is the third most common movement disorder in the UK, yet awareness remains low. It can affect any region of the body — including the eyelids, face, jaw, vocal cords, torso, limbs, hands and feet — and presents differently depending on the area affected.

Each type of dystonia has its own clinical name, making diagnosis and treatment even more complex.

Sadly, long waiting times and frequent misdiagnoses mean people can go years without answers, often enduring an immense emotional toll alongside their physical symptoms.

We know the struggle of living with
dystonia goes far beyond the physical.

Providing support and understanding

At Dystonia UK, we know the struggle of living with dystonia goes far beyond the physical. When you’re facing a condition so few understand, it can feel incredibly isolating. That’s why we’re dedicated to creating a community where no one feels alone.

Our nationwide support groups provide a safe space to share experiences, receive practical advice and connect with others who truly understand the challenges of dystonia. We also host community events across the UK, bringing people together in solidarity while raising awareness and offering opportunities to meet healthcare professionals and experts.

Raising awareness through creativity

Education is key to understanding dystonia. That’s why we’ve developed animations to help explain the condition in clear, engaging ways, making it easier for patients, families and professionals to grasp the complexities of dystonia. Our podcast also shares personal stories from those living with the condition, reminding listeners that they are never alone.

Join the community

On our website, explore FAQs, webinars, podcasts, animations and more. Together, we aim to build a future where no one has to ask, ‘What is dystonia?’ — because everyone will already know.