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.
Alison Joplin is a Qualified Counsellor with neck dystonia (cervical dystonia / spasmodic torticollis). Read more
Chinny has whole body dystonia (generalised dystonia) and channels her feelings about the condition into her art. 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
Julie tells the story of how her son Thomas coped with his mum having dystonia (Meige Syndrome). Read more
Short documentary by Laura Jane Stacey 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 Halocha is a musician who was diagnosed with neck dystonia (cervical dystonia) in June 2016. Read more