Understand Epilepsy with Innovative, Free Story-Telling App
Having a seizure and facing an epilepsy diagnosis can be a terrifying time. Medicine X is encouraging anybody affected by Epilepsy to download a FREE new app, Epilepsy Xplained, to help diagnosed Australians (and their family and friends) to understand their journey, in the privacy of their own home.
Epilepsy Xplained uses a real-life story to explain treatment options, side effects, the importance of support people and counselling, and to demystify the science behind it all. The app is available from Google Play and iTunes, and at www.epilepsyxplained.com.au and has been developed in conjunction with Epilepsy Action and The Epilepsy Foundation and is supported by UCB Australia Pty Ltd.
Emily, 32, is the real-life inspiration for the main character in the Epilepsy Xplained app. She was diagnosed with Epilepsy at 28 after she had a seizure in a car park. It has taken her more than three years of pushing for answers and trialing different treatment options and medication to reach a point where she is beginning to feel in control of her life again.
'New diagnosis sucks and the more information you can get your hands on, the better," says Emily, who lives in the Hunter Valley region of NSW. 'I still don't believe I know all I need to about epilepsy and I've had to do most of the research on my own.
'When I was first diagnosed, it felt like all I got was a long list of things I couldn't do. I felt really confused and didn't know where to turn or what to do. It felt like my whole life stopped right then," continues Emily. 'It's taken a long time and I've had to fight – suicidal thoughts, for different treatment options and to get access to more information – but I've reached a point where I've been able to accept my diagnosis and adjust my lifestyle to a point I feel OK with."
Epilepsy Xplained has been developed to translate complicated -doctor speak' into interesting and engaging language so everyone can have access to medical information they can understand. The app has been developed in collaboration with both patients and healthcare specialists, including specialist doctors, as well as epilepsy support groups by Medicine X, working with both Epilepsy Action and The Epilepsy Foundation.
Carol Ireland, CEO of Epilepsy Action, says being diagnosed with epilepsy can be overwhelming and terrifying. 'Epilepsy Xplained provides information in a way that is easy to understand and digest for both those diagnosed and their family and friends."
Graeme Shears, CEO at The Epilepsy Foundation, believes access to accurate information is key. 'It's often difficult to know where to turn when you're first diagnosed. I hope this type of app can really make a difference to help people with epilepsy understand a diagnosis doesn't mean you can't go on to live a fulfilling and rewarding life."
Ian Common, Head of Neurology at UCB Australia (the company that supported the development of Epilepsy Xplained), acknowledges the need for opening up new channels to access accurate information on epilepsy for newly diagnosed people and their loved ones. 'We are proud to support this initiative to provide information in a new format to anyone with an interest in epilepsy."
Amanda Langerak, CEO at Medicine X, the organisation that creates the apps, believes story-telling is the best way for patients to understand their disease journey.
'Around 80 per cent of medical information provided by doctors is forgotten straight away. The Xplained apps are designed to fill these gaps in a creative and powerful way," she said.
Epilepsy Xplained is a free resource available for all Australians. This resource is sponsored by UCB, and was developed in collaboration with a group of healthcare professionals. To find out more, visit: www.epilepsyxplained.com.au.
Interview with Emily Howman
Question: Can you share your story and Epilepsy diagnosis, with us?
Emily Howman: I was 28 and walking through a car park to get some eye drops. I woke up in an ambulance with people asking me questions. I had a second seizure at the hospital and was diagnosed and sent to a neurologist. I'd had "Episodes" before, weird things at weird times but nothing that resembled a seizure. So I had to learn a lot in a very short period of time.
Question: What is Epilepsy Xplained?
Emily Howman: It's an app that walks you through a story in regards to epilepsy, diagnosis and information you should know.
Question: What did the Epilepsy Xplained teach you?
Emily Howman: That there's more information out there that I hadn't searched or even thought of.
Question: Can you tell us about how your real-life story helped create Epilepsy Xplained?
Emily Howman: The main story is based on me, right down to the pet ferret (only now I have four).
Question: How has using the app helped you and your family and friends?
Emily Howman: It's given a narrative of things I had to deal with and shown them that there's more information out there.
Question: How important is support from family and friends to those with Epilepsy?
Emily Howman: It can make or break your epilepsy experience. Epilepsy can be so severely negative that it shuts down your whole life, or it can be a growing and learning experience with the right support.
Question: How does your Epilepsy affect you on a daily basis?
Emily Howman: I have partial seizures a lot; I have to tell people basically as soon as they meet me because I haven't got it under control yet. I have to take medications and deal with side effects. Everything that happens could be a dangerous situation for me so I often have to take extra precautions such as alerting someone to the fact that I'm in the bath etc.
Interview by Brooke Hunter