Dystonia is a neurological movement disorder that is estimated to affect at least 100,000 people in the UK.
Dystonia affects people of all ages including children. Some children will be born with dystonia while others may go on to develop it. If symptoms start in childhood, it tends to spread across multiple parts of the body and be more generalised.
It is usually a lifelong condition, however in most cases it is not life limiting. While currently no cure, there are several treatments available that can help relieve the symptoms and scientists around the world are actively pursuing research toward new therapies.
If your child has been diagnosed with dystonia, you care for a child with dystonia or you are a child with dystonia, Dystonia UK and our volunteers are here for you.
Recognising the challenges in managing episodes of severe dystonia, the British Paediatric Neurology Association (BPNA) has developed documents called “Dystonia Action Plans”. Read more
Dystonia Animated is a series of short animations, as part of our Reach Out, Reach All campaign. They focus on “What is dystonia?” in children and how the diagnosis affects their lives. Read more
Our digital conference for children and families held over two days, the 19th and 20th of March 2021. Read more
Lana has a provisional diagnosis of paroxysmal dystonia and dyskinesis. Lana's story is told by her mum Georgia. 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
The Medikidz are a team of incredible medical superheroes who help children understand more about their health conditions. Request your free comic book now! Read more
Dr Dan Lumsden, Consultant Paediatric Neurologist, and Mr Jon Ellenbogen, Consultant Paediatric Neurosurgeon, answer your questions about the best way to support young people with dystonia, in this webinar recording as part of our 'Reach Out, Reach All' campaign. This webinar took place on 13th December 2021. Read more