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Tourette syndrome

Tourette Syndrome (TS) is a neurological disorder; this means it affects the nervous system.  It is characterised by repetitive, stereotyped, involuntary movements and vocalisations called tics.

TS is often undiagnosed, or misdiagnosed and although early symptoms are almost always present, they are not always noticed. The onset of TS is usually during childhood, and is much more common in males than females. Most people with TS experience their worst symptoms in their early teens.

Living with Tourette Syndrome

Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements, such as eye blinking or shoulder shrugging. Complex tics are distinct, coordinated patterns of movement involving several muscle groups, such as jumping, uttering words out of context, or touching other people. Although some people with TS may swear or make socially inappropriate and derogatory remarks, this is actually very rare.

Tics often worsen due to excitement or anxiety and are better during calm, focused activities.  Certain physical experiences can trigger or worsen tics, for example a tight collar might trigger a neck tic. Tics do not go away during sleep but they are usually significantly diminished.

Many people with TS experience additional problems, such as:

  • Inattention
  • Hyperactivity
  • Reading and writing difficulties
  • Obsessive-compulsive symptoms.

Practical tips

Remember that TS presents itself in many different ways and varies from person to person. Make sure you discuss the young person’s symptoms with them and also with their parents, addressing any difficulities they may have.

  • Unless the young person is in obvious discomfort, it is usually best to ignore tics. However, some people with TS may make funny statements or jokes, which it is fine to acknowledge.
  • Remember that although some people with TS are able to suppress their tics for a short time, they will eventually need to come out. Be tolerant and compassionate.
  • Some people with TS may experience sleep disorders. It is worth bearing this in mind when planning residential experiences. Again, talk to the young person and parents about any coping strategies they have.
  • Be aware of where you keep any sharp or potentially hamrful objects, and, if possible, keep these out of the way. Similarly, it will be beneficial to think about where to sit around campfires. You may wish to have a leader nearby who can prevent any dangerous situations occurring.
  • Certain food additives and stimulants such as caffeine are thought to make tics worse.

This information has been written in conjunction with Tourettes Action, a UK charity working to make life better for people with TS. Visit their website using the link to the right for more information, or call their helpline on 0300 777 8427.

 

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