Golden Light Awards

  The IBE International Golden Light Awards recognise the contributions of people affected by epilepsy in their community and those who care for them. Candidates were nominated by the IBE chapter in which they are involved (as a member, volunteer, board or staff member) and were required to submit a written article, between 500 and 800 words in length, telling the story of their life with epilepsy. The 2019 International Golden Light Awards winners are: Amirsoheil Pirayeshfar, Iran Elizabeth Dueweke, USA Emma Lovise Larsen, Norway Mohammad Agus Rahmatulloh, Indonesia Nina Mago, Uganda Rebecca McGhee, Scotland Scarlett Paige, Australia Sofia Betanzo, Chile Click on a winner's name above to read their submitted article. Congratulations to all winners! The awards will be presented during the 33rd International Epilepsy Congress, taking place in Bangkok from 22nd-26th June, 2019. The awards were first presented in 2004, with the title ‘Outstanding Person with Epilepsy Award’. They have been given every two years at each Asian & Oceanian Epilepsy Congress since then. The title of the award was changed to Golden Light Awards in 2016, to recognise the fact that people with epilepsy should not be defined by their condition, thereby embracing the call of the International [...]

Hello, my full name is Michela Sofía Betanzo Quiero but everybody calls me Miki. I was born in Concepción, Chile, but I’m currently living in Santiago. I had my first seizure two hours after I was born, nobody knows exactly why but the fact is that all the tests showed a scar in my brain and here I am telling you my story. My life was pretty normal until I was 6 years old. At that age I had a seizure and then I started to have many seizures each day. This is a refractory epilepsy which is the most severe type, drug-resistant and does not respond to treatment. I take a “cocktail” of drugs and I have seizures every single day. I have a beautiful family and good friends who make my world a happy place. My parents, my “popa” and my father, are taking care of me from heaven. I am happy enough, nothing perfect but very happy, I am full of life, dreams and a great future ahead. This is the beginning of the book “Living fully” that I wrote and I want to publish. This is the story of my life with epilepsy, in which I tell [...]

My Epilepsy Journey Scarlett Paige My epilepsy journey started in January 2006. I was 18 and had the next 2 years of my life planned out I was about to embark on my life long dream to be an au pair in the United States of America. I was on the way to gaining my licence and had a job working in early education saving up for my trip. Then epilepsy hit! Standing in supermarket with my mother without warning a complex partial seizure. I have no recognition of this. With my GP having no explanation of what had happened the (seizure ) was dismissed. 6 months of increasingly worsening complex partials still with no diagnosis - that's when the tonic colonics reared their head. After three nocturnal tonic clinics I was taken to the Royal Hobart Hospital and diagnosed with epilepsy by Neurologist and Epileptologist Professor Mark Cook. Initially I was thrilled with this diagnosis and was put on medication to control the seizures. They worked for a while, but the complex partials came back. This is when the depression hit a realisation of not being able to hold a licence meant I could no longer travel to the US [...]

Living with Epilepsy Rebecca McGhee I'm not going to lie, I'm not happy about having epilepsy. I can't drive or stay up too late and I have to get up at 8am to take my tablets and have breakfast (even on the weekend) plus it also makes finding a job a lot harder. But as rubbish as those things are, there are also many things that if I didn't have epilepsy I would have missed out on. I wouldn't have worked with epilepsy charities promoting epilepsy awareness or taking part in fundraisers. Epilepsy has given me a number of opportunities to help and support other people who are living with the condition and to help spread epilepsy awareness. I have lots of seizure types, tonic clonic, partial and absences and living with epilepsy has made some things challenging for me. I’ve had loads of injuries, including broken bones, cuts and bruises, broken teeth and even a ruptured spleen! I’m a regular at our local emergency department and have visited many more when I’ve had a seizure away from home, but I don’t and won’t let it stop me doing things. I just make every situation as safe as it can be [...]

My story Nina Mago I cannot say there is much I remember about my early childhood at this point, I was only a child like any other. But one thing I recall my parents often said, “Don’t make her laugh she will fall ill”. As I grew up, I understood that emotions like excitement were a trigger for my seizures. When I was about six years old, my parents moved to Moscow, Russia, where I attended part of my early education. At that age, I had experienced seizures and seeing a neurologist whilst in Russia is when I finally had the condition confirmed. For seven years, I was constantly monitored and although I was on medication, the seizures kept on. Some days were without seizures, while some were rough. I spent some days in the safety and comfort of my teacher’s arms, rocking back and forth, while she taught the rest of the class and occasionally felt for movement when I came around. Epilepsy remained a chronic condition accepted and managed for me while in my Russian school: I was one of the best performers, very active and articulate with a vibrant social life. From the Ugandan perspective, the story was [...]

Hello my name is Mohammad Agus Rohmatulloh. I have epilepsy, I have a physical disability and I have difficulty in speaking, but this has not stopped me from advocating for a better understanding of epilepsy in families, in communities and beyond. My parents describe me as a happy and healthy baby but then at the age of five years old I suffered multiple seizures that resulted in my loss of speech and my ability to walk and I struggled to eat without the aid of a feeding tube. I was very fortunate that my family dedicated their lives to me, not only by offering their constant support and attention when I was convalescing, but they also were willing to sell their house to provide more income towards my care. With their love and encouragement, and my determination, my speech improved and I was able to walk again although had a limp, but this meant I was able to go to public school and lead a fairly normal life. Then a few years later in my junior school, I experienced a second round of seizures and that was the start of my frequent seizures, but it was not until getting to high [...]

Who am I We all have a choice in how we tell our own story. You can tell it like they do in novels or romantic flicks, where everything is so dramatic or just very superficial. However, we all know that those movies are hardly ever the truth. And no matter what challenge life gives you, you also have a choice in how you deal with it and how you live our life. The epilepsy was going to be mine challenge. Luckily, for me I have always had a supporting family and friends by my side, who treated me as a “normal” teenage girl and let me have a “normal” childhood even If I had epilepsy. I used to call the hospital my second home, so I have a lot of experience as a patient. Some of them are good and some of them are not. I think the worst thing was the feeling of never having anyone to talk too. I always had my mom and dad, friends and family but they could never completely understand how it really was. Therefore, I decided that I wanted to spread information and be a spokesperson for those who feels alone, for those [...]