We know how isolating this condition can be. We also know that it is possible you will not know anyone else who has the condition and sometimes it can be a struggle to even find people who have heard of it.
You are not alone and we wanted to share with you some stories of members and supporters who are on this journey with you.
If you would like to share your story, please email [email protected] and a member of our team will be in touch. We want you to share your story in your own time and your own way, but if you’re wondering about some of the practicalities, we’ve got some handy tips here.
Andy's wife, Mandy, has neck dystonia (cervical dystonia). Andy and Mandy are joint coordinators of the Berkshire Dystonia UK Support Group and Andy serves as a Trustee of Dystonia UK. Read more
Callum's story, as told by his dad Neil. Callum is a young man with Down Syndrome who has neck dystonia (cervical dystonia). Read more
Chinny has whole body dystonia (generalised dystonia) and channels her feelings about the condition into her art. Read more
Chrissy shares her experience of being diagnosed with neck dystonia (cervical dystonia). Read more
Donald tells his story of living with neck dystonia (cervical dystonia) and how he continues to challenge himself to raise awareness of the condition. Read more
Jane talks about her experience of coping with eye dystonia (blepharospasm). Read more
Joseph tells his story of living with whole body dystonia (generalised dystonia). Read more
Julia shares her story of living with neck dystonia (cervical dystonia) and pregnancy. Read more
Julie tells the story of how her son Thomas coped with his mum having dystonia (Meige Syndrome). Read more
Lana has a provisional diagnosis of paroxysmal dystonia and dyskinesis. Lana's story is told by her mum Georgia. Read more
Liam shares his story of the long journey to diagnosis and how his life was changed by having severe dystonia. Read more
Short documentary by Laura Jane about her father who has dystonia. Read more
Luca's story, as told by his mum Emma. Luca has whole body dystonia (generalised dystonia) caused by the DYT1 gene. Read more
Roger lives with mouth, tongue and jaw dystonia (oromandibular dystonia) and has compiled a list of practical tips gleaned from his own personal experience, medical articles, speech therapists and fellow members. Read more
Ross talks about his experience of coping with neck dystonia (cervical dystonia / spasmodic torticollis). Read more
Vanessa is a musician who was diagnosed with neck dystonia (cervical dystonia) in June 2016. Read more