Tourette's Awareness Day

Tourette’s Awareness Day is commemorated every year on 7th June to raise awareness about the Syndrome that is characterized by tics - involuntary sounds, commonly known as Tourette Syndrome. Since a social stigma is associated with this condition, this day aims to raise awareness about such a syndrome and bring all those together who have this condition.

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What is Tourette Syndrome?

Tourette syndrome (TS) is a neurological disorder where an affected person makes repetitive and stereotyped involuntary movements, or noises, called ‘tics.’ People who have TS don’t have control over the unusual movements or sounds ('tics') that they make. These tics are commonly manifested as throat-clearing or blinking. Repetition of words, blurting them out, using swear words or spinning around are also among the commonly observed tics.

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What is the cause of Tourette's Syndrome? Does the person have any other problem apart from Tics?

The cause of Tourette syndrome remains unknown but is attributed to certain genetic and environmental factors. Tics tend to get noticed in early childhood between the ages of 7-10. Patients with Tourette syndrome have the same amount of intelligence and work output as a normal person, but the stigma around their condition can affect their everyday lives.

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Facts on Tourette’s Syndrome (TS)

• First symptoms of TS usually get noticed between ages 3 and 9 years.
• It can occur in any ethnic community
• Females are 3 to 4 times less likely to get affected by TS
• An estimated 200,000 Americans are said to have the most severe form of TS, and nearly 1 in every 100 individuals exhibit some milder form of chronic motor or vocal tics.
• People who have TS, experience their worst tic symptoms in their early teens,.This tends to improve in later teens and adulthood.
• TS can only be diagnosed if the patient has had both motor and vocal tics for at least 1 year. There is absolutely no diagnostic blood, laboratory, or imaging tests for this syndrome.

Can a person with Tourette's Syndrome live a normal life?

Absolutely. Tourette’s syndrome does not affect the intellect of a person. This example is embodied by a speaker and teacher Brad Cohen who despite having TS didn’t give up on his dream to become a teacher, after being turned down by 24 schools. He finally became a teacher. His story is truly inspirational to all the people with TS and other disabilities. His life has even been portrayed as a movie - Front of the Class. A Hindi remake of this movie named “Hichki” created awareness on this lesser known syndrome in India.

Gavin Clampett, a seven year old hit the headlines when he made a video to stop kids from making fun of him because of his Tourette’s Syndrome. His effort was to make people understand what Tourette’s syndrome really is and how others can help sufferers deal with tics--which are nothing more than like a hiccup, small and harmless.

What can be done to show our support for the people with Tourette’s Syndrome?

First know more about how Tourette’s syndrome affects people’s lives and help sufferers, especially young children deal with the tics. Teach people to use the three C’s ‘Stay Calm, Be Confident, Have Control’ to manage stress and tics.

Teachers can promote communication with parents and fellow students to ignore symptoms that can be ignored and not make the person feel self-conscious about the tics.

What is it that I can do in 'Moving for TS’ campaign?

Moving for TS is a new campaign promoted by Tourette’s Action, a UK based organization working to raise awareness on Tourette’s Syndrome. You can choose a place, time and a challenge for yourself or other supporters to complete during the month of June. There is basically no limit to what you can do, it could be anything from a 5 km family dog walk, to 15-mile cycle, the choice is up to you.

How can I register and participate in 'Moving for TS’ campaign?

Here are some rules to explain how to go about your registration

• Each registration will cost around £10 per adult and £5 per child (up to age 15)
• When you and your team are finished with the task, email the organization to state how you have completed your tasks with the help of a photo.
• You can even post a photo of your challenge on their facebook page or twitter account using the hashtag #MoveForTourettes.
• The organization will send medals and certificate once the challenge is complete.

While talking to a person with Tourette’s syndrome, don’t be distracted by the simple tics. Pretend as if you didn’t notice the tics and continue the conversation. That will your biggest support to someone struggling to be accepted with simple tics.

References:

1. Move For Tourettes - (https://www.tourettes-action.org.uk/news-278-move-for- tourettes.html)
2. TS Statistics - (https://www.dollars4ticscholars.org/our-ts-story/ts- statistics/)
3. 2018 Tourette Syndrome National Advocacy Day - (http://www.tourette.org/blogs/public-policy/2018-tourette-syndrome-national-advocacy-day/)
4. Tourette Syndrome Awareness Week, 6–12 May 2018 - (https://www.volunteeringqld.org.au/blog/1435-tourette-syndrome-awareness-week-6-12- may-2018)

Source-Medindia