Where can I find out more about dystonia? Expand We have lots of useful information available in different formats. Available online More detailed information on our website. Webinars. 'Dystonia Matters' podcast. @DystoniaUK on all social media platforms. Personal stories. Available in print 'Dystonia Matters' magazine. Information leaflets and booklets. Available in person Dystonia UK support groups. Our conferences. We also work with a number of charities across the world supporting people with dystonia too. You can also find additional information on their websites too: United States: Dystonia Medical Research Foundation Canada: Dystonia Medical Research Foundation Canada Australia: Dystonia Network of Australia Europe: Dystonia Europe
Can you put me in touch with other people with my type of dystonia? Expand We can’t put you in touch with people directly, but there are other ways you can find people to share experiences. You can: attend a local support group join an online support group attend a Dystonia UK conference
Who can I talk to for support? Expand 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.
How will Dystonia UK support me? Expand Dystonia UK is here for you every step along the way. We… facilitate the 70+ physical and online support groups that are run by our amazing volunteer coordinators which give the opportunity to share experiences and meet others with dystonia provide information through our website, social media channels, booklets and 'Dystonia Matters' magazine host webinars featuring medical professionals and specialist speakers lobby on behalf of dystonia patients to engage governmental bodies and raise awareness of the condition are active members of policy making organisations in order to affect real change in the treatment and services for neurological conditions build relationships with pharmaceutical companies and medical professionals to ensure the voice of dystonia patients is heard produce the 'Dystonia Matters' podcast to magnify the voice of people living with dystonia create national campaigns to increase recognition of the condition across the UK and worldwide join together with our sister dystonia organisations across the world to raise increased awareness during Dystonia Awareness Month host virtual and in person events including the annual 'Dystonia Matters Live' conference and 'Living with Dystonia Days' which bring together medical professionals and other clinicians to discuss advances in research as well as ways to live well with the condition
Are there any other organisations that can support me? Expand Dystonia UK is the only UK national charity supporting people living with dystonia but there are other organisations that can provide advice and help too. Dystonia organisations Dystonia Europe Dystonia Ireland Dystonia Medical Research Foundation Neurological organisations The Brain Charity The Brain and Spine Foundation Disability organisations Disability Rights UK Contact Scope Mental health organisations Mind Samaritans Parents and carers organisations Council for disabled children Family Fund Independent Provider of Special Education Advice Other organisations Citizens Advice
I feel I’m struggling with my dystonia. Where can I get psychological support? Expand If you require emergency help do not delay reaching out. Call 999 or speak to someone 24/7 at Samaritans by calling 116 123. We recommend you start by talking to your GP about how you feel. You should ask to be referred to the appropriate support services. These could include counselling, cognitive behavioural therapy (CBT) or mindfulness guidance. You may have to wait for an appointment. If you feel you need to speak to someone in the meantime, you can contact: Mind Mind is a mental health charity in England and Wales. Founded in 1946 as the National Association for Mental Health. Mind offers information and advice to people with mental health problems and lobbies government and local authorities on their behalf. Samaritans Samaritans is a registered charity aimed at providing emotional support to anyone in emotional distress, struggling to cope, or at risk of suicide throughout Great Britain and Ireland, often through their telephone helpline.
I feel lonely, is there someone I can talk to? Expand 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. You can also read more about loneliness and find advice on how to get help on the NHS website. If you prefer to speak to someone on the phone, or would like to speak to someone regularly we recommend: The Brain CharityA charity based in Liverpool that offers emotional support, practical help and social activities to anyone with a neurological condition and to their family, friends and carers. They also run a befriending service which you can enquire about by phoning 0151 298 2999. Age UKThe leading national charity for elderly people that provides help, information and advice. They also run a befriending service which has the possibility of setting up a regular call. Contact them 24 hours a day by phoning 0800 470 8090.