The focus of these stories is a study being carried out at the University of Nottingham, where researchers are building maps of the brains of young people, with and without Tourettes. Young people participating in the study will be monitored and scanned, using MRI imaging each year for many years, to see how their brains and their tics (if they have them) develop. The Brain Atlas study aims to use brain scans to identify and treat Tourettes more effectively, and to predict more accurately how the condition will impact on a person’s future.
Hannah, a young person with Tourettes who’s taking part in the study featured in much of today’s coverage. She spoke eloquently about her experiences, just as she did when she gave a talk at a recent conference about Tourettes in Birmingham. A few years ago she made a great film when she was thirteen as part of another West Midlands Programme.
Professor Stephen Jackson, who’s leading the research, said they’d already found changes in the brain they believed were linked to Tourettes. In particular, those with the condition tend to have notably thinner frontal lobes and thinner myelin – the ‘white matter’ that covers brain nerve cells. Professor Jackson thinks ‘some of these differences are due to the brain reorganising to gain some control’ over the tics. The study will explore these theories over a long period and allow researchers to build up a more detailed understanding of the complexities of Tourettes.
One of Professor Jackson’s key aims is to work out how to predict which young people will eventually ‘grow out’ of the condition. It’s estimated that for about 60% of children with Tourettes, their tics will not continue into adulthood. But while many young people’s tics do lessen as they get older, if I were raising a child with Tourettes I’d be wary of relying on this statistic too heavily, and I’d remember that for four out of ten the condition will continue into adulthood.
I’ve met young adults still desperately waiting for their tics to go and delaying decisions about their future as a result. My message to children and young people with Tourettes would be:
Learning to explain your tics to other people is empowering – difference is something to celebrate, not to feel embarrassed by. Don’t put off doing things because of Tourettes – instead, look for ways to manage your tics safely.
I feel encouraged, both by the research and by the articulate young people who spoke about their roles in it. I sometimes feel frustrated by the relatively slow progress of research, but this study sounds like one that’s got the potential to add significantly to our understanding of Tourettes, its development, and the brain more generally.