As a psychologist working in Belgium, I am excited to be a host organiser for an upcoming conference European Society for the Study of Tourette Syndrome (ESSTS) annual conference on the 7th–9th of June 2023 in Brussels.
Why should people be interested in Tourette Syndrome (TS) and tic disorders?
One of the battles of patient representatives and support associations is to get people to understand that TS isn’t rare. With the same prevalence as autism but much less attention, TS is something that is crying out for more attention to increasing understanding by the public.
More adults are now coming forward to say that they have TS and a more cohesive patient community coming together is using its voice in current times in the UK and other countries. The more and more advocates that stand up revealing they have TS, the larger and more political a voice the patient associations become, and the more researchers think of inventive ways to help support people with the condition moving this condition forward into the limelight.
Celebrities supporting technological breakthroughs
In recent years more celebrities have felt able to reveal that they have Tourette Syndrome to the public. Billie Eilish and even more recently we have the singer Lewis Capaldi. Not only has he become one of the current most well-known figures who will talk about their TS – he has even been seen trying out some of the new technology being developed to help people with their tics.
I’m excited that at the conference in Brussels in June not only will there be a packed programme of presentations, posters, workshops, prize giving, panel discussions and much more: there will be a demonstration of this new technology, Lewis Capaldi has already tried in front of the conference audience. You can also see here other people trying the device.
When it comes to research, diagnosis and treatment of tic disorders like Tourette Syndrome we may consider it to be behind the times. I have often heard that little exists in the way of support for patients and families in the country who are touched by this condition. So too equally we can imagine that education and healthcare professionals also need training and support so they can better serve their patients in regard to their Tourette Syndrome.
There seems to be such a lack of research in Belgium as to be startling in its absence. In data relating to prevalence studies, TS expert Dr Tara Murphy created a map to help show where research into the prevalence of TS has been conducted. In the map below we can see the unmarked countries (based on a 2022 search) had not published any prevalence research on TS but may have published other studies and data. Being a board member of the Belgian Tourette Syndrome Association (Iktic-Jetique www.iktic.be) I was disappointed but not surprised that Belgium was blank. In fact, I am not sure if any research into Tourette Syndrome has been carried out in Belgium.
If we build it – will they come?
The ESSTS organisation have recognised this gap and is supporting Belgium by providing a training course as part of the ESSTS conference in June. This will be open to clinicians (physicians, psychologists, psychotherapists, nurses, medical students and other professionals who are interested in the clinical aspects of TS) on Tuesday, 6th June 2023 1pm–6pm at the Congress centre of the Royal Museum for Central Africa.
Also for the first time in Belgium in order to support and recognise the different languages found in the country (including French and Dutch) there will be behavioural therapy for tics training workshops in Dutch French and English to cater for many Belgian healthcare professionals as possible.
Do visit the ESSTS website for more information and any one of the amazing support associations around the world for more information on what TS is about.
Seonaid Anderson, PhD is a chartered psychologist and freelance neurodiversity consultant. She tweets @Seonaidanderso2
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