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Tourette’s Syndrome affects roughly one percent of the UK population. If looked at proportionately in Jersey, the number of Islanders living with the neurological condition is well over a thousand. But unlike well-documented neurodivergent experiences, those living with Tourette’s and tics, as well as their families, have no dedicated support system in place in the island. Indeed, not much is publicly known about the condition in the first place. That is until now. With a breakthrough medical device that is partially based and funded in the Island, lives impacted by Tourette’s will potentially be changed forever. The brains behind Neupulse have used two decades of scientific study and millions of pounds in investment to design a wearable device, that looks not too dissimilar from a wellness tracker, to ease tics and provide those that have them the ability to control them for perhaps the first time ever. Tourette’s syndrome is a disorder that causes sudden uncontrolled repeated movements or sounds. Depending on severity and mental state, people with Tourette’s can tic non-stop, even in their sleep. The experience differs from person to person. Neupulse’s watch-like device uses varying levels of electronic stimulation to calm tics, which have no other medical cure. The research and development of the technology have been funded by the University of Nottingham since 2005. The device is designed as not a cure but a management option. That is a point that the company’s Jersey-based head of e-commerce, Ben Garland, explained. “The only way I can describe what happens is it’s a bit like magic [when people wear the device],” he said. The launch comes following last month’s release of a star-studded British comedy film that aimed to shine a light on what it’s like living with Tourette’s Syndrome. Screened in Jersey in partnership with the med-tech company, ‘I Swear’ features Neupulse’s pioneering devices and is used by those with TS to prove its effects. Additionally, high-profile cases of TS and its associated conditions, such as anxiety, have exposed the challenges faced by those living with it. Musician Lewis Capaldi’s very public struggles with the condition in 2023 were a clear example, when he struggled to perform on stage at Glastonbury. Mr Garland said the Scottish singer had in fact used one of the earlier iterations of Neupulse’s device. In its official clinical trial, 135 people with TS or a tic disorder had the device for four weeks. Regular human factor trials have taken place since to get the product where it is today. The battery lasts for eight hours and removes the need for prescribed drugs to ease the effects of TS and its co-related conditions. Mr Garland explained the intention behind creating the technology was to benefit the community and increase awareness about TS. “We want to educate people as well and try and break down some of those stigmas [surrounding tic disorders].” Mr Garland explained as a result of the film and the “phenomenal” response it received in Jersey, he then realised the lack of support existing here for TS and tic disorders. Other than private Facebook pages, there is no currently dedicated support group or charity in Jersey for those with TS or tic disorders. AllMatters Neurodiverse, however, do offer their support as part of their wider neurodivergent support system. As a result of his time in Jersey with the TS community and Neupulse, Mr Garland is now acting as a middleman for people and families with Tourette’s. He said he and the Neupulse team hope to eventually link the Island with the national charity Tourettes Action and call on their expert advice and support for Islanders in need. “The screening was to try to raise some awareness about Tourette’s in the community and get people talking about it,” Mr Garland said. He said the device is seeking CE mark approval as a medical device from UK regulators. Longer term a recommendation from NICE would mean it could become available on the NHS. While that long process is ongoing, the company is preparing to start the commercial sale of the product and the device is currently available to pre-order. Describing the effect of the device, Mr Garland said: “When I see people wear it, it’s crazy.” “Everyone [who wears it] has a different experience. But it’s just incredible, not just how you see it physically, but I’ve seen motor tics reduced and heard that internal tics are calmed too.” He said it also goes one step further: “People with Tourette’s syndrome talk about an urge to tic and compare it to trying to hold in a sneeze or trying not to blink. The device can help reduce that urge as well.” Mr Garland added that medical trials are ongoing to ascertain whether the science could also aid individuals with related conditions to TS, such as OCD, anxiety, and ADHD. One thing he did make clear, however, is that the device is not intended to cure Tourette’s and tics, it merely aims to give individuals the chance to manage them if they so wish. “Tourette’s Syndrome is a part of a person. We’re not trying to change people because a lot of people [with TS] see it as part of their personality,” Mr Garland said. He explained that certain circumstances that may exacerbate tics for some people would be an ideal time to provide them with the ability to control them, such as a job interview or a first date. “It’s about giving people control,” he added. “That’s the main thing.” Mr Garland added how he hopes following the local screening and the launch of the device in Jersey, others will take the reins to establish a TS support network in Jersey for the first time. For now he is part of the team championing the effort. For more information on Neupulse or check out the device visit: https://neupulse.co/ To find out more about Tourettes Action in the UK visit: https://www.tourettes-action.org.uk
