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Sofia Betanzo, Chile – IBE Golden Light Award Winner 2019
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 [...]
Scarlett Paige, Australia – IBE Golden Light Award Winner 2019
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 [...]
Rebecca McGhee, Scotland – IBE Golden Light Award Winner 2019
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 [...]
Nina Mago, Uganda – IBE Golden Light Award Winner 2019
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 [...]
Established in 1961, the International Bureau for Epilepsy (IBE) is an international organisation for national epilepsy organisations (IBE chapters) that exists to provide support for a strong global network, encourage the development of new chapters in underserved areas of the world, and to encourage communication and collaboration among all members so as to meet our mission and vision.
Our members are patient/family focused and driven organisations and we work collaboratively with our professional and government partners worldwide.
Our strategic priorities are to ensure that epilepsy is
recognised as a health priority worldwide; that the human and civil rights of people with epilepsy are enhanced and protected wherever they might live; that people with epilepsy are empowered to maximise quality of life; and that research into prevention, treatment, care and consequences of epilepsy are promoted.
We work to achieve these priorities through a range of programs including:
- Public Information and Health Education
- Advocacy
- International Best Practice Exchange
- Helping Build Communities of Care
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What is Epilepsy?
Epilepsy is one of the most common serious diseases affecting more than 50 million people globally. There are many difference causes for epilepsy including genetic disposition, head trauma or brain tumour.
Epilepsy affects almost every aspect in the life of the person diagnosed with the disease. For many people with epilepsy, the stigma attached to the disease is more difficult to deal with than the disease itself.
People with epilepsy have a 3-6 times greater risk of premature death. Many of the deaths from epilepsy could be prevented with appropriate medication and treatment.
