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Tourette Syndrome is when someone has physical tics and at least one tic where they make a sound. It is also known as Tourette’s, TS, Tourette’s disorder, or Gilles de la Tourette Syndrome.

What is it like for siblings if their brother or sister has Tourette syndrome?

Siblings can get on well with their brothers and sisters who have Tourette Syndrome but can sometimes feel embarrassed when they are out and about with them as people can stare if they make noises or behave differently. They may also worry that their brother or sister will get bullied at school.

What causes Tourette syndrome?

A tic is a movement or sound that a person can’t control. It might be blinking eyes, coughing, sniffing, movements of their face, head, arms or legs. A tic may also include unusual sounds, rude words or swear words (verbal tics). Nobody knows what causes it, but experts think that it is a problem with the brain. Usually, more boys than girls are affected by it.

What does it mean?

Most people with Tourette Syndrome have mild tics such as blinking, throat clearing, and head nodding. They are usually able to find ways to cope with their tics and knowing about the condition can really help to reduce how it affects them. Some people with Tourette Syndrome get very embarrassed and upset about their tics and not being able to stop them.

What treatment is there?

Most children with tics do not need treatment for them. The tics will come and go, and can sometimes improve by the time they are an adult. However, TS is a lifelong condition and whilst symptoms may improve for some people, they can reappear at times of stress. The most important thing is having good information about tics and understanding what they are and being able to explain them to other people if necessary. There is some therapy called ‘habit reversal training’ or ‘exposure and response prevention,’ which may help to reduce tics. There are also simple things children can try out themselves that might help. Being active, or relaxing, often reduces how often the person has tics (this is different for everyone).

Some children’s tics are helped with medication, but this is usually only if the tics are really upsetting or cause pain. There is no reason why children with Tourette Syndrome should not achieve their goals. Most people with Tourette Syndrome have a full, happy, and successful life.

 

Information approved by Tourettes Action March 2024