Who can I talk to for support?

If you require emergency help do not delay reaching out. Call 999 or speak to someone 24/7 at Samaritans by calling 116 123.

You might want to talk to someone who has experience and knows what it's like to be diagnosed with dystonia. You can find others to talk to through one of our local support groups or online support groups.

There are also lots of popular forums online, including many on Facebook, which might also be useful. Dystonia UK does not monitor the content of these forums and is not responsible for moderating or reviewing any advice given. It is important to be careful about following any advice given to you online. We advise that before following any recommendations you check with your primary medical team.

If you are struggling to cope and think you may need to speak to a professional then you should ask your GP or neurologist to be referred to the appropriate support services.