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How Dystonia Affects Everyday Living

Dystonia is a neurological condition that affects movement, causing involuntary spasms of the muscles. The condition affects an estimated 100,000 people in the UK and can have serious impacts, both physical and mental, on quality of life.

Article - Jun 2022 Dystonia

People with dystonia experience various movement issues, such as the wrong muscles contracting when movement is attempted or the contraction of muscles even when the person does not intend to move at all. These tremors and twitches, known as 'dystonic movements' are often painful and can have obvious affects on the individual's ability to carry out ordinary daily tasks like walking, eating and dressing.

The symptoms of dystonia vary widely from person to person and can even vary in individuals from day to day. Though usually a lifelong condition, in some cases the symptoms of dystonia may improve with time.

The Neurological Alliance, a charity comprising more than 70 organisations, works to 'transform quality of life for people with neurological conditions by improving treatment, care and support'. The charity carries out an in-depth study, entitled 'My Neuro Survey', every two years to produce a detailed picture of the care, support and treatment given to people with neurological conditions.

The survey for 2021/2022 was responded to by over 8,500 adults and young people, more than 500 of whom have dystonia. Key findings from the survey included:

  • 80% of adults and 70% of children said that their condition affected their quality of life to a 'great or moderate extent'
  • 78% of adults and 76% of children said that their condition affected their day-to-day activities to a 'great or moderate extent'
  • 57% of adults and 48% of children said that their condition caused them pain to a 'great or moderate extent'
  • 55% of adults and 60% of children had experienced significant delays to specialist appointments
  • 40% of respondents did not feel that their mental health needs were being met
  • Nearly 40% of adults said that they were not given any information about the condition they had been diagnosed with

Living with dystonia can present many different problems. The uncontrolled movements can affect the person's ability to work or drive and can make the person feel that they are unable to attend social events, where their involuntary movements may cause them embarrassment. Such problems have a clear impact on mental wellbeing and can lead to the person becoming isolated.

There are various treatments to help manage the symptoms of dystonia and thus improve quality of life; these include medication, physiotherapy, occupational therapy, Botox injections and deep brain stimulation techniques. Wearing specialist, made-to-measure garments from the SDO® (Sensory Dynamic Orthosis) collection by Jobskin® can also help control dystonic movements.

SDO® garments are Class 1 medical devices and are made from super-comfortable Lycra® material. By providing constant, consistent dynamic compression, the garments help to reduce the incidence and severity of dystonic movements while increasing proprioceptive and sensory feedback.

Jobskin® made-to-measure SDO® garments are available in a variety of formats to suit different areas of the body. For more information, please browse our website or get in touch with our dedicated team.