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The effect of adult onset dystonia

Dystonia has a significantly adverse impact on quality of life (QoL) measures as well as on mental health. Among those with focal dystonia, QoL reported at baseline on day of treatment included (Statistics from Gudex 1998):

  • Mobility: 53% of people report mobility problems.
  • Daily activities: 64% report problems with daily activities and 23% report problems with self-care.
  • Pain: 83% report severe or moderate pain.
  • Mental Health: 65% report moderate or severe anxiety/depression. It is increasingly accepted that both stress and anxiety may also exacerbate symptoms of dystonia and that psychological problems are caused not only by the symptoms but also possibly by the condition itself.

For people with focal dystonia, QoL is significantly worse for all these dimensions than the general population. Untreated cervical dystonia also has a significant effect on employment status. In one study of those in employment at the onset of cervical dystonia, 69% reported reduced productivity, 31% reported reduced hours or responsibilities and 19% reported unemployment as a result of their condition (Molho 2009).

In addition, 75% of people with dystonia mentioned an impact on their social life and 80% feel self-conscious about how their condition makes them look (Dystonia Society 2011).

The effect of early onset dystonia

The effect of early onset dystonia is widely variable. It can moderately or severely affect one or more of mobility, posture, verbal and written communication, daily living activities and self-care. Pain is often a significant feature of severe cases.

The impact on development, educational and social opportunities cannot be underestimated. Early-onset dystonias reduce the confidence and self-reliance of children and young people through reduced independence and increasing demands of almost all activities. Fatigue, arising from this increased effort as well as difficulty getting to sleep and a fragmented night’s sleep further interferes with activity and participation.