Just diagnosed

Finding out you have dystonia affects everyone differently and you may be feeling a mixture of emotions. For some there is a feeling of relief after a long journey to diagnosis, while for others the diagnosis is scary and brings with it fear of the unknown.

If you have been diagnosed with dystonia or know someone that has been diagnosed, we have information and support to help.

Across our site, you will find answers to both your initial questions and those you may have when you are ready to learn about your condition in more detail. As part of our ‘Reach Out, Reach All’ project launched in 2019, we have a growing series of webinars, videos, and podcasts from people with dystonia, as well as clinicians and partners for information and guidance.

We also have a member’s magazine ‘Dystonia Matters’, that is issued three times a year with real life stories of people with dystonia, industry updates and information on our projects to help keep people with dystonia connected and informed.

Our vast network of volunteers is also here to support you on your journey. You might find talking to someone else who has been through something similar to you, particularly as you come to terms with your new diagnosis, helpful. You can find others to talk to through one of our national support groups or virtual online groups.

A dystonia diagnosis may feel overwhelming at first, but most people manage to develop effective strategies for coping with the challenges that having dystonia brings. Throughout your journey, Dystonia UK and our volunteers are here for you.