Our stories Patient stories Cathryn - Epilepsy It is hard to imagine what it would be like living with epilepsy. Cathryn explains; “Epilepsy has placed restrictions on my life. I was boiling water recently; I had a seizure and burnt my hand and foot very badly. It’s frustrating that I can’t even do simple tasks without putting myself at risk.” Cathryn was one of the first of two patients to participate in a world first research project that is changing the way we record and potentially treat epilepsy. Chair of Medicine at St Vincent’s Hospital, Professor Mark Cook and his team have implanted a radical device that records the electrical activity of both sides of the brain to monitor epileptic seizures. Minder™ is the culmination of years of research and development led by Prof Mark Cook and A/Prof Chris Williams from the Bionics Institute, along with colleagues from the University of Melbourne and Cochlear Ltd. You can read more about this here. Cathryn received the Epi-Minder implant in November 2019 and wore the device for six months. During this period she underwent intensive monitoring at the hospital over two separate week-long stays. Research Fellow, Dr Alan Lai explained that many people who have seizures struggle to accurately record their frequency because they are often unaware they have had an episode. “During the patient’s stay we collect all three sets of data: the implant, in patient monitoring and a seizure diary. This comprehensive data will better inform how we treat seizures because we’ll have the ‘whole picture’,” Alan said. Being part of this trial was something Cathryn was really keen to do because none of the drugs she has tried over the last 15 years have been successful at controlling her ‘phasing out’ seizures. “I’m so excited to be a part of this trial. Having an accurate record of my seizures means I may be able to take part in other trials, giving me the best chance to stop my seizures,” Cathryn said. The ultimate goal is for the implant to eventually become a clinical device to help identify far more accurate treatment methods for people with epilepsy. This trial was supported by the Victorian Government’s Victorian Medical Research Acceleration Fund and the John T Reid Charitable Trusts. Content for this article and image have been reproduced with the approval of St Vincent’s Foundation.