Tourette Syndromean introduction

tourette syndrome – an introduction

“People need to learn that TS is involuntary.

It’s not our fault and TS people often have much more than just TS.

We don’t need pity, but some will always need help, support and particularly understanding”.

Respondent, Online Survey 2008

© Tourettes Action

tourette syndrome – an introduction

What is Tourette Syndrome (TS)?•TS is a neurological condition.

•The exact origin of TS is unknown.

•TS is characterised by tics (involuntary movements and sounds)

•TS affects 1 in 100 school children, many of whom continue to have

symptoms in adulthood.

•There are thought to be between 200,000 to 330,000 people with TS in

the UK.

© Tourettes Action

tourette syndrome – an introduction

What is it not?

•TS is not a mental illness

•TS is not degenerative

•TS does not affect IQ

•TS does not always feature involuntary swearing (known as coprolalia). Coprolalia only affects10-15% of people with TS.

© Tourettes Action

tourette syndrome – an introduction

What are tics?

•Tics are involuntary movements or sounds

•Some people with TS are able to suppress tics for a limited time, but suppressing can feel uncomfortable and the tics usually have to be released eventually.

•Tics can range from simple (eg blinking) to complex (eg full-body movements)

•Some people feel an urge to tic, before the tic happens

© Tourettes Action

tourette syndrome – an introduction

What are tics?“It is true that people with TS have no control over their tics but a more appropriate word than ‘involuntary’ would be ‘compulsive’.

People with TS feel an irresistible urge to perform their tics as the average person would want to scratch an itch.

Some are able to suppress their tics, maybe even for hours, but this will lead to a stronger outburst once they allow themselves to tic freely.”

© Tourettes Action

tourette syndrome – an introduction

twirling

Some examples of tics

Blinking

sniffing, sn, sn ,, ,, ,,, hair flicking,,,,,,,, clicking, AHEMclearing your throatAHEM saying the same word over and over over and over over and over over and over over and over over and over over and over over and over over and over over and over over and over over and over over and over over

and over over and over AND OVER AND OVER AND

OVER AND OVER AND OVE

Shrugging

jumping

touchingCoughing

© Tourettes Action

tourette syndrome – an introduction

Changing tics•Tics wax and wane

•Tics can be affected by periods of stress or ‘life events’

•Different tics can come and go

•Tics can change in severity and frequency

•Tics can be affected by different activities and environments

•Looking at past tics and how they’ve been managed can give you an idea of how someone with TS could be supported.

© Tourettes Action

tourette syndrome – an introduction

How is TS diagnosed?•A specialist will ask questions about a person’s symptoms and family history

•Sometime scans or blood tests are used to rule out other conditions

•For TS to be diagnosed, both movement and vocal tics need to be present for a minimum of 12 months

•There can be breaks from symptoms for up to 3 months within this period

© Tourettes Action

tourette syndrome – an introduction

ComorbiditiesOnly about 12% of people with TS seen by clinics have only tics.The rest have additional conditions such as:

•Obsessive Compulsive Disorder or Behaviours (OCD or OCB )

•Attention Deficit Hyperactivity Disorder (ADHD)

•Self-Injurious Behaviour (SIB)

•Non-Obscene Socially Inappropriate Behaviour (NOSI)

•Depression

•Autistic Spectrum Disorders © Tourettes Action

tourette syndrome – an introduction

“It may look mild on the outside but many tics are not visible to others.

I also have bouts of more severe activity in my tics which then makes me feel like my TS isn’t as mild as I would like.”

© Tourettes Action

tourette syndrome – an introduction

ChallengesSome people with TS have symptoms that are only mildly troubling.

Others have symptoms that are intensely disabling:

• physically (tics can cause damage to joints or self-injury, eg hitting oneself)

• educationally (TS can make it impossible to follow what is going on in class)

• economically (TS can be a barrier to employment)

• socially (TS can lead to ridicule, bullying and social exclusion)

© Tourettes Action

tourette syndrome – an introduction

Causes

?•Tourette Syndrome is an inherited condition.

•Scientists don’t yet know the exact causes.

•They think is it probably a mixture of different things: genes and environment.

© Tourettes Action

tourette syndrome – an introduction

Treatment

•There are some medications that may help the symptoms of TS.

•Therapies such as cognitive behavioural therapy which tries to alter the way we think, and habit reversal training can help some people to replace problematic tics with less painful/embarrassing ones.

•Clinical trials are underway in the UK for Deep Brain Stimulation for severe cases of TS. This involves surgery to place implants which deliver high frequency electrical pulses to specific areas of the brain.

© Tourettes Action

tourette syndrome – an introduction

How you can helpUNDERSTAND

•Don’t be afraid to ask if you have questions about TS. You can always come to us. www.tourettes-action.org.uk

•Don’t be afraid to ask someone how TS affects them.

•Don’t assume that the portrayal of TS in the media is accurate.

•Try to understand if they are having a particularly difficult bout of tics. It may make it hard for them to perform tasks that they usually have no trouble with.

© Tourettes Action

tourette syndrome – an introduction

How you can helpACCEPT

•Don’t ask someone with TS not to tic.

•Apply rules flexibly: don’t penalise people for what they can’t help.

•Remember that the Disability Discrimination Act may apply.

•Don’t tease.

© Tourettes Action

tourette syndrome – an introduction

How you can helpSUPPORT

•Remember you’re dealing with an individual. The symptoms of TS and how they affect people vary greatly.

•Ask them how you can help.

•Provide them with space to release their tics in private, if they prefer.

•Give them information about Tourettes Action.

•Help us to be there for people with TS. Contact Tourettes Action.© Tourettes Action

tourette syndrome – an introduction

“When my tics are at their worst, I am less likely to want to perform certain tasks, although I still do them anyway.

I manage by basically just getting on with it.

Sometimes I do go and stand in a toilet cubicle in order to just try and relax”

TS at work

© Tourettes Action

tourette syndrome – an introduction

“When tics aren't so bad I can do a million and one things.

However, when they are worse, things like climbing ladders and suppressing tics in front of customers become very stressful.

I don't want to keep on reminding my fellow colleagues that I can't do something like open packaging because of TS tics, as it's almost like someone has to over-compensate for me.”

TS at work

© Tourettes Action

tourette syndrome – an introduction

TS at work

“I am always open with everyone and even went to the point of asking HR to build this into their induction phase for new employees.

This helps them become aware of my TS before they meet me so they won’t be alarmed by any tics or noises.

This has worked 100%”

© Tourettes Action

tourette syndrome – an introduction

“During my lifetime, I have developed many ways of controlling tics and OCD.

Most people find it difficult to believe I have TS.”

Living with TS

© Tourettes Action

tourette syndrome – an introduction

“I’ve come to terms with it.

It gives me a unique character, and I’m proud of that.”

Living with TS

© Tourettes Action

tourette syndrome – an introduction

If you’d like to know more about Tourette Syndrome you can contact

Ring the Helpline 0300 777 8427

or email help@tourettes-action.org.uk

There is also lots of information on the website

www.tourettes-action.org.uk

© Tourettes Action