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Vaccines against COVID19 are currently being approved and becoming available. There is currently no evidence to suggest that having epilepsy is specifically associated with a higher risk of side effects from a COVID-19 vaccine. For people with epilepsy, the risk of COVID-19 infection and potential complications far outweighs the risk of side effects from a COVID-19 vaccine. As with other vaccines however, a fever can develop after a COVID-19 vaccination. This could lower the seizure threshold in some people. Antipyretics (e.g. paracetamol/acetaminophen) taken regularly for 48 hours after the vaccination (or for the duration of fever) will minimize this risk. Before you receive a COVID-19 vaccine, make sure to let your vaccination provider know that you have epilepsy, as well as any other important medical information, such as: Allergies, especially an allergy to any ingredient in the vaccine Allergic reactions to prior vaccines (e.g. flu vaccine) Current or recent fever or infection All medications you are taking, especially medications that suppress the immune system (e.g. immunomodulatory or immunosuppressive medicines) or anticoagulants. If you are pregnant or nursing, or plan to become pregnant As with any vaccine, you should not receive the COVID-19 vaccine if you are allergic to any of its [...]

We need your help! IBE is conducting a survey in Europe to understand how well informed women of childbearing age are on the risks involved in epilepsy and pregnancy and how well this information is understood. The survey is currently available in English, German, Georgian, Russian and Spanish. Why? We need to establish current demographics and the shortfall in knowledge in this very important area for both the mother and her unborn child. The survey is the first part of a Europe-focused project on Epilepsy & Pregnancy, the results of which will inform on design and delivery of future interventions through the development of a multi-faceted toolkit. If Phase One is successful, the programme will be rolled out in other regions. What next? The result of the survey will inform us of the following: The experiences of women with epilepsy of child bearing age What are the areas in which the IBE needs to intervene What our intervention programme should look like. What you can do? If you are living in Europe and willing to participate in the survey, it will take no more than 8 minutes to complete. The survey is completely anonymous, and we will not be able to [...]

To achieve our 50 Million Steps for Epilepsy challenge doesn’t require that you climb a mountain. Yet, that is exactly what Fred Beuchi and his team are doing right now as a prequel to the official start of the 50 Million Steps challenge on 4th January. With a sister who has epilepsy, Fred’s aim is to raise awareness about the condition not only in Kenya but across the African region. Fred, who lives in Kilifi in Kenya and is a founder member of the Foundation for People with Epilepsy, a Provisional Chapter of IBE, set out last week from Nairobi with his team to cycle to Arusha, Tanzania, at the base of Mount Kilimanjaro and to then climb to the top. When they reach the summit, they will plant a flag that carries the message that 'epilepsy is manageable'. Already the cycle to Arusha has been completed and the team is now on Day 3 of the climb to the summit. Fred is tracking the steps he is taking on the climb using graphs from a health app. On Day 1 of the climb from the base of the mountain, Fred walked almost 7,000 steps. Not a lot, you might think [...]

New campaign launched by the IBE ahead of International Epilepsy Day 2021 50 million people worldwide are affected by epilepsy according to WHO/OMS official figures. There are many different causes for epilepsy including genetic disposition, head trauma or brain tumour. For some, the cause is unknown. Epilepsy affects almost every aspect in the life of the person diagnosed with the disease. For many people living with epilepsy, the stigma attached to the disease is more difficult to deal with than the disease itself. To raise awareness and to raise vital funds for epilepsy organisations across the world, the International Bureau for Epilepsy (IBE) is asking people to join together to walk 50 million steps in the lead up to International Epilepsy Day – one for each person in the world who has epilepsy – as part of the ‘50 Million Steps for Epilepsy’ challenge. “The 50 Million Steps for Epilepsy campaign is an opportunity for people around the world to raise awareness of the impact of epilepsy and raise vital funds for the organisations that support them. We’ll need at least 500 people to walk 20,000 steps each week during the campaign if we’re to be successful, so we hope everyone [...]

International Epilepsy Day 2021 will take place on Monday, February 8. This is a powerful opportunity to highlight the problems faced by people affected by epilepsy, their families and carers, in every region of the world. A highlight of International Epilepsy Day 2020 was seeing a number of landmarks and buildings around the world turn purple to mark the day! The Lega Italiana Contro de l’Epilessia (LICE) coordinated events in Italy that included having the Colosseum in Rome and a fountain in Trieste light up in purple to raise awareness. Tower 42, the fifth tallest skyscraper in London, projected the International Epilepsy Day logo from the top of the building as well as raising awareness among everyone inside the building through electronic posters and signage in lifts. Colosseum, Rome, International Epilepsy Day 2020 Tower 42, London, displaying the International Epilepsy Day logo in 2020 We hope to see more landmarks lit up to mark International Epilepsy Day in 2021! We're asking you to encourage landmarks in your town or country to light up purple - let's shine a light on epilepsy! Please let us know if a landmark in your area will be participating, and contact us [...]

Making Epilepsy a Health Priority in Africa - WHA Resolutions 68:20 Youths with Epilepsy across Africa Speak Out! Join us for our monthly Webinar series! Date: 20th October, 2020 Time: 2:00pm Nairobi time - 1:00pm Pretoria time Moderator: Action Amos, Vice President Africa, International Bureau for Epilepsy To register and receive a webinar link please email [email protected]   Panel Discussion (30 mins): Why the Global Epilepsy Plan matters for Youths with Epilepsy in Africa? Moderator: Comfort Mussa, Cameroon, IBE Epilepsy Journalise Award Winner 2014 Panelists: • Gresham Africa, WHA Program Coordinator, Epilepsy South Africa • Shakira Nasuuna, Board Member, Epilepsy Support Association, Uganda (ESAU) • Sharon Mbugua, Kenya Association for the Welfare of People with Epilepsy (KAWE) Petition (20 mins): Youths with Epilepsy Petition to 24 Ministers of Health and Parliamentary Health Committees in Africa to support the World Health Assembly (WHA) Resolution 68:20 Speakers: • Chantelle Kanyabutembo, Rwanda - Swahili/French • Bessong Takang Eyong Obasi Praise, Cameronn - English • Felix Joao, Mozambique - Portugese

It is with great sadness that IBE learned of the death of its esteemed Treasurer, Anthony Mulenga Zimba. Anthony had a long history of service to IBE, having served on the African Regional Committee from 2005 to 2009 and on its International Executive Committee for the last 11 years, firstly as Vice President for the African Region from 2009 to 2017 and then as Treasurer from 2017 until his passing. During this time, he worked tirelessly on behalf of people with epilepsy and those who care for them. His particular focus was on his beloved Africa and, as a result of his efforts, many IBE chapters in the region were supported through the IBE Promising Strategies Program in a range of projects aimed at improving their quality of life through training, advocacy and employment opportunities. He was also a member of the organising committee of the African Regional Epilepsy Congresses that took place in Nairobi, Cape Town, Dakar and Entebbe. Anthony was the founder of the Epilepsy Association of Zambia in 2001, which became a chapter of IBE soon thereafter. To improve his knowledge and skills in the epilepsy and allied fields, he undertook a number of professional courses including the [...]