Dystonia is a neurological movement disorder which involves uncontrolled, sometimes painful muscle spasms, muscle cramps, shaking, uncontrolled blinking and body twisting. It can affect the whole body or just one part.
While in some cases the cause is unknown, it can be caused by Parkinson’s disease, a stroke, multiple sclerosis or cerebral palsy. Unfortunately most people suffering from dystonia will have it for life and will therefore require life-long treatment in order to try to manage their symptoms.
The severity of symptoms can vary greatly from person to person. Solicitors in the clinical negligence team at Penningtons Manches know first-hand how severe symptoms can be as they act for a number of children with cerebral palsy, the vast majority of whom suffer from dystonia as a result of their condition. These children often develop cerebral palsy due to mistakes made at the time of their birth, the most common being a failure to expedite delivery despite there being signs that the baby was in distress.
The Dystonia Society, a charity that provides support and advice for people living with the disorder, has set up a number of support groups in the UK which are run by volunteers. These groups offer an opportunity for dystonia sufferers and their families to share experiences and socialise with others suffering from the condition.
The Dystonia Society also works hard to raise awareness of the condition, especially during events such as Dystonia Awareness Week. This year’s campaign, which runs from 5 – 13 May 2018, is called ‘Go green and be seen’ because although dystonia affects approximately 70,000 in the UK, it is not a well know condition.
The charity is encouraging people to wear green clothing and post pictures on social media using the hashtags #DystoniaAwareness2018 and #GoGreen4Dystonia. It has also organised ‘Just Walk’, a sponsored walk taking place on 12 May 2018 at Goodwood Racecourse in West Sussex. The distances are 10km, 25km, 35km, 45km and 60km. The 10km and 25km are for all ages so the whole family can take part. For more information, visit: https://www.dystonia.org.uk/Event/just-walk.
Emily Hartland, an associate in Penningtons Manches’ clinical negligence team, comments: ”Having assisted with many cerebral palsy claims, I have met with parents whose children have dystonia. As the condition can have a huge impact on the child and the rest of his or her family, knowing where to go for support and advice is crucial. Unfortunately the condition is still not well known and the symptoms caused by dystonia mean it is often mistaken as a mental health rather than a neurological condition. I therefore hope that awareness campaigns such as Dystonia Awareness Week will encourage people to join support groups and help the general public gain a better understanding of the condition. I will be doing my bit by wearing green and posting on social media throughout the week.”