 Youngest Epilepsy South Africa Ambassador at 16 years old  A BMX racer at national and international level and promotor of epilepsy in extreme sport  Initially diagnosed with epilepsy at 9 months  Seemingly “outgrew” epilepsy at 4 and re- diagnosed at 14

 Epilepsy does not hold me back but encourages me to prove that I am better that the other guys I ride against  I push myself more to prove to myself that I can do it  I am doing well, having achieved top 6 in South Africa and 4 th in Africa  I’m going to Columbia on 18 May 2016 to compete in the BMX World Championships and am really excited to be part of a group of South Africans participating

EPILEPSY MEANS Education Prevention Inspire Leadership Evaluation Publicity Support Youth

EDUCATION  Educating people about epilepsy: What it is What to do during a seizure How medication works to prevent seizures Different types of epilepsy Seizure triggers  Epilepsy can start at any age, but is most commonly diagnosed in people under 20 or over 65  In developing countries (like South Africa) 1 in every 100 people has epilepsy

PREVENTION  Protection against head injuries (e.g. accidents, falls and other injuries)  Keep track of when and where your last seizure was  Follow an appropriate diet which may remove triggers – For example, one of my triggers is caffeine and I have eliminated this from my diet  Monitor the epilepsy of medication in your blood by going for blood tests every 3 – 6 months  Medication can control seizures in 80% of persons with epilepsy  60% of people with epilepsy will respond positively to the first anti-epileptic medication prescribed

INSPIRE  We must show that you can still have a great life despite having epilepsy  Don’t stop your hobbies or sporting activities once diagnosed with epilepsy  We must help everyone understand that epilepsy is not the end of the world, but a chance to show people that they can still be just as good as they were before their diagnosis  I try to inspire and support every persons with epilepsy that I meet or anyone that knows I have epilepsy

LEADERSHIP  Encourage people through education and support (doing talks and outreach work)  People with epilepsy need support to help them become leaders - just like I’m getting support from Epilepsy South Africa (and my family)  Many people with epilepsy won’t speak up due to the stigma attached to the condition  We need to encourage persons with epilepsy to be more open to each other and the public  As an Epilepsy South Africa Ambassador I am there to help and support people with epilepsy

EVALUATION  Some people don’t know that they have epilepsy and are frustrated by their condition as they don’t understand what is happening or what it is  There are more than 40 different types of epilepsy  Many types of epilepsy have very similar symptoms and triggers but this makes no difference to me  I believe you either have epilepsy or not - it doesn’t matter what type  Epilepsy is epilepsy  We need more testing to evaluate the number of people with undiagnosed epilepsy

PUBLICITY  I think it is very important to get the word out about people with epilepsy so others can learn about epilepsy and what happens when someone has a seizure  I publicize epilepsy at BMX tracks, skate parks and other riding areas by wearing the Epilepsy South Africa logo on my race shirt  Many people come up to me and ask why I have this logo on my shirt which helps as an introduction or a conversation starter to talk about epilepsy

SUPPORT  We need to help and support everyone with epilepsy and their families  Try to play the role of a teacher by helping them through the shock of finding out that they have epilepsy  Support groups for both the person with epilepsy and their family  Instead of just getting information from doctors we must give emotional support and encouragement  I know this would have helped me and my family at the beginning of my epilepsy journey

YOUTH  Many young people with epilepsy think they are ill or an invalid and that they don’t have support from their families and friends  That was my mindset before I realized that I had my family and friends behind me  I got out of that mindset, picked myself up and carried on with my life  I still have down moments when my tests come back without hoped-for results or when I have a seizure  Lets help young people realize they have a future in life

IN CLOSING  I say that you must not judge someone for having epilepsy  You must rather help and support them to become more confident and outgoing despite having epilepsy  Thank you for your time today and letting me explain what it is that young people with epilepsy need from society