70,000 sufferers (8,000 of which are children as young as just a few months old) yet this condition is still classed as rare.

Sadly  the profile of childhood Dystonia is extremely low and often gets seen as an adult condition. Children sometimes suffering there whole child lives without diagnosis untill adulthood.

The wrong treatment of Dystonia can cause mental health problems,Dislocations, Fractures and breaks of bones.

From my own experience with my little boy pictured, he now has Double dislocated hips that require surgery due to poor treatment.

So what needs to be done

The profile of Dystonia especially childhood Dystonia needs to be raised to stop misdiagnosis and earlier correct treatments given.

NICE Guidelines for Dystonia need a full rework pinpointing that ALL patients need an individual rescue care plan.

Better research into Dystonia to include children