Chapter News

'El Mar de los Mil Nombres' ('The Sea of a Thousand Names'), is a new children's story, written by Antonio de Benito and illustrated by Teresa Fudio Delgado. The story is aimed at children with epilepsy and their families. It has been released by the Spanish organisation National Association of People with Epilepsy (ANPE). "We firmly believe that the understanding of the disease can be changed through education and what better way to reach children than with a story." Isabel Madrid (ANPE) 'El Mar de los Mil Nombres' has been launched today, May 24th, to mark National Epilepsy Day in Spain. You can read the story here    

An update from Stefanie Pagel, of Deutsche Epilepsievereinigung - an IBE Chapter in Berlin, Germany Today we are excited to share the latest activities of our federal organisation, which of course have been a tremendous challenge with respect to the corona pandemic including its statutory restraints. If you are unfamiliar with our work, here is a brief summary: The German Epilepsy Union (Deutsche Epilepsievereinigung) is a non-profit and non-governmental organisation and recognized nationwide association of German epilepsy self-help. In an alliance between national associations, regional self-help groups, government representatives and the International League against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE), we work closely together to create a world in which a person's life is not restricted by epilepsy. We publish a lot of print-material about epilepsy, which we offer “for free”. We print books around epilepsy as well and a magazine called “einfälle” which is edited four times/year (with 5000 copies and a big reach in hospitals as well as in doctor’s offices). For the administrative work, related to the organization of seminars etc., we have an office in Berlin with two employees, working there full-time. The management board (“Vereinsvorstand”) is working on a voluntary base, with no financial [...]

Report by Kenneth Nsom, Director of CODEF, an IBE Associate Chapter in Cameroon Cameroon is one of the hot spots of the Corona virus in Africa. Cameroon has one of the highest numbers of people infected with COVID-19. In Cameroon there are about 15,592 people infected with the virus as of July 16, 2020. People with epilepsy are infected and affected differently by COVID-19 compared to other people in Cameroon and the rest of the world because people with epilepsy are a risk group. Their health conditions in Cameroon are further worsening by the North West/South West (NWSW) war or crisis commonly called here as the “Anglophone crisis” since 2016; and the Corona virus added in 2020. Any government that has not taken epilepsy as a health priority will not see a need to assist persons with epilepsy with COVID-19 preventive gadgets such as face masks, hand sanitizers or soaps. Meanwhile people with epilepsy really need huge support at this time; as they are one of the groups of vulnerable people to COVID-19 considering that any sick person has a weakened immune system. Persons with epilepsy are people with disabilities (PWD) in Cameroon like in other countries that need support and [...]

The pandemic has brought significant change to the epilepsy and third-sector communities. As a charity specialised in supporting those bereaved by epilepsy, and dedicated to preventing epilepsy deaths, our funding evaporated when UK lockdown hit. Our small team had to quickly develop new ways of meeting the increased demand on our services, with fewer resources; made more challenging by receiving no Government support. Despite this, SUDEP Action launched three research projects to understand the impact of COVID-19 on people with epilepsy and their carers, healthcare workers, and on those bereaved by epilepsy. As the more we learn, the better we can support these communities to hopefully reduce risks, improve wellbeing and save lives. Working alongside University of Oxford, and supported by international researchers and clinicians, our epilepsy risks surveys have received over 1,250 responses worldwide. Initial findings show an alarming rise in epilepsy-mortality risks and marked disruption to epilepsy services. 34% of people with epilepsy reported changes to their health since the pandemic began, mentioning worsening mental health, concerns over other health conditions, and sleep difficulties. A third of those reporting health changes also saw worsening seizures: “I am not currently being seen by my specialists…it’s worrying. I would have to [...]

Floral scents that benefits many How did one Prague non-profit deal with the extraordinary circumstances of a state of emergency? With 'magic flowers'! These are created by people with epilepsy and can help those in need. The non-profit organization Společnost E operates a flower workshop, 'The Arrangement', in Prague. People with epilepsy and their loved ones work in it. It is often the only achievable way of living for them. The shop lost most of its orders in a state of emergency. Theatres, receptions, cafes, weddings... "We didn't ignore it either," says the head of the workshop, Tereza Chvalová. "We definitely don't hang the apron up on a nail or throw pots into the rubbish bin. We leave most of our employees at home for their safety, but we have a couple of hard workers who have prepared a beautiful spring offer. We still create bouquets or flower decorations and we can deliver them contactlessly to the customer's doorstep. ” 'Magic Flowers' help However, there are significantly fewer orders than before the emergency situation, when bouquets were tied in The Arrangement for the National and Company Theatres, the Cirk la Putyka Theater, the Albatros Media publishing house and twelve Prague cafés. [...]

On February, 10th, 2020 in Kharkiv, Ukraine held an International Epilepsy Day event to support patients. This was an initiative of the Bureau of Epilepsy in Ukraine and the Ukrainian League Against Epilepsy, with the endorsement of the International Bureau for Epilepsy (IBE) and SI “Institute of Neurology, Psychiatry and Narcology of the National Academy of Medical Sciences of Ukraine”. International Epilepsy Day was established to draw public attention to the problem, to expand the opportunities of people with epilepsy, and to improve their quality of life. The event took place at the “Planeta Kino” Cinema at the “French Boulevard” Shopping Mall in Kharkiv with support of a number of government and not-government organizations. More than 100 participants came to support International Epilepsy day. Cutting-edge specialists of the Neurology, Psychology and other medical institutions of Kharkiv were able to talk with all interested people about the most urgent issues related to the disease. Children were offered entertaining games, animators, workshops, history, chemistry etc. Meanwhile, the Kharkiv branch of the Red Cross provided emergency medical training for epileptic seizures. The President of the Ukrainian League Against Epilepsy, Andriy Dubenko gave a detailed introduction to the disease, statistics, and encouraged the support of [...]