If your child has been diagnosed with dystonia, you care for a child with dystonia or you are a child with dystonia, it can feel overwhelming. But you don’t have to face it alone. Dystonia UK and our volunteers are here for you - we’re here to help you find information, reassurance, and community.
"We have no reason at all to not feel positive for the future and we’re eternally grateful for the medical teams both at home and in London. We’re grateful for Dystonia UK and their support.” - Emma, mum of Luca
Dystonia is a neurological movement disorder that is estimated to affect at least 100,000 people in the UK, 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.
Recognising the challenges in managing episodes of severe dystonia, the British Paediatric Neurology Association (BPNA) has developed documents called “Dystonia Action Plans”. Read more
In this episode of Dystonia Animated we are so excited to introduce you to Dani, Charlie and some of their family. They share what their lives are like with a dystonia diagnosis. Read more
Episode 2 of Dystonia Animated takes us on a visit to the hospital with Charlie. Read more
In episode 3 of Dystonia Animated we introduce Sam and her family. Sam shares her experiences of deep brain stimulation surgery. Read more
Read our guidance to support children living with dystonia in education. 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
This presentation by Dr Daniel Lumsden was part of Dystonia Matters Digital: For Kids, Carers & Families, our digital conference for children and families. Read more
Dr Dan Lumsden and Mr Jon Ellenbogen answer your questions in this 'Reach Out, Reach All' webinar recording. This webinar took place on 13th December 2021. Read more