Epilepsy app to monitor condition

It has been launched in memory of a young woman who died of Sudden Unexpected Death in Epilepsy (SUDEP).

Katie Hallett, a 20-year-old trainee Bristol nurse died after an epileptic fit in 2006. She had been having roughly two seizures a year since the age of 16, but it was thought her epilepsy was well under control with medication.  Liz Hollingdale, Katie's mum, said: "Katie hadn't had a seizure for a year at that point. She was in her third year at university, and we weren't too concerned about her epilepsy. "She was getting on with her life. So when it happened so suddenly, it was very difficult. We felt guilty that we didn't even know SUDEP was something that could happen. "She was always so careful about taking her medication." Katie's family, who live in Cornwall, started fundraising in her memory almost immediately, setting up Kt's Fund. The initial aim was to fund an epilepsy nurse based in Cornwall, but the NHS decided not to back the plan. Following a meeting with SUDEP Action's chair of trustees Professor Stephen Brown and director Jane Hanna, Kt's Fund decided to back a series of projects to help raise awareness and influence improvements in epilepsy services in. Now, Kt's Fund has helped launch an app, Epilepsy Self Monitor, or EpSMon. In a world first, sufferers can use the app to monitor and record their symptoms, which will allow them to track patterns which develop in their seizures and identify potential triggers. Both the NHS in Cornwall, Katie's family, SUDEP Action and Plymouth University have worked on the app. It brings life-saving knowledge to the fingertips of people with epilepsy by allowing them to assess their risk every three months. It prompts them to see their doctor when their risks increase and suggests simple ways they can lower them, by asking questions and creating advice. EpSMon is based on evidence from the SUDEP and Seizure Safety Check List, a facility that enables clinicians to monitor changes in risk factors in their patients. Mrs Hollingdale said: "I believe the app could have helped save Katie's life. She was at higher risk of death because her nursing meant she did shift work, which increases risk in epilepsy sufferers. "Her friends could have used it with her and helped monitor her too. "Katie would've loved what we're doing. She was a very caring girl, always putting others before herself, so this work is a fitting tribute to her." The app is being launched in the UK this week, and will be released to eight other countries in the coming months. Rohit Shanker, a clinician with Cornwall Partnership NHS Foundation trust, said: "This app will make people safer. Certain factors can increase a person's risk of sudden death in epilepsy, including increased alcohol intake and sleep deprivation. He added: "This way, people can track their lives, and work together with their GP in a holistic way." There are around 600,000 people with epilepsy in the UK. About 87 people are diagnosed with the condition every day. Epilepsy accounts for 1,200 deaths in the UK every year, at least 600 of these through SUDEP. Research shows that about 42% of these deaths may be preventable through better management of known risk factors. Click here to download the app.
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