On the occasion of International Epilepsy Day, Neuraxpharm promotes the digital initiative: “Life-changing Minutes”, with the aim of raising awareness about this condition and contributing to its destigmatisation
- Neuraxpharm is promoting an initiative to improve awareness of epilepsy on the occasion of International Epilepsy Day 2021
- 100,000 new cases of epilepsy in children and adolescents are diagnosed each year in Europe
Every year 100,000 new cases of epilepsy are diagnosed in children and adolescents in Europe1. Epilepsy is one of the most common neurological disorders in children. Although it can affect people of all ages2, it is more common in children between 5 and 9 years old or in those over 80 years old3.
Epilepsy is a disorder of the central nervous system, which is usually manifested through repeated epileptic seizures produced by generalized bursts of electrical impulses. Most cases of childhood epilepsy are benign, they disappear with age and do not cause any long-term damage. Although there are very serious cases of epilepsy that are associated with cognitive delays, they are the least frequent.
A better understanding of epilepsy and how to treat it could help improve the quality of life of epilepsy patients. It is estimated that 70% of people with epilepsy could live seizure-free lives if they were properly diagnosed and treated4.
On the occasion of International Epilepsy Day, which is celebrated today, 8th February, Neuraxpharm, the leading European specialty pharmaceutical company focused on the treatment of Central Nervous System (CNS) disorders, is promoting the digital initiative: “Life-changing Minutes”, with the aim of raising awareness about this condition and contributing to its destigmatisation, in addition to shedding light on what it is like to live with epilepsy, especially during childhood.
With this initiative, Neuraxpharm invites us to take a few minutes to learn more about epilepsy, helping to dispel myths and reduce the stigma that still surrounds it for many people. The company is providing access to verified information on epilepsy via the website www.knowingepilepsy.com. This includes tips on what to do if someone is having an epileptic seizure, or what we should not do, as responding appropriately and quickly and knowing when to use rescue medication can be crucial for their health. The website also includes information about those myths and facts that still surround this condition and provides access to a children’s story “Minutes With Emma”, the story of a 7-year-old girl diagnosed with epilepsy. All of these materials can be downloaded from the website and can be shared and printed.
The contents of “Life-changing Minutes”, will also be shared on Neuraxpharm’s LinkedIn and on the social networks of the company’s affiliates (Instagram, Twitter and YouTube) as of 8th February until 26th March, with the hashtag #LifechangingMinutes.
Within the framework of the initiative, two internal actions are also being promoted in all Neuraxpharm subsidiaries throughout Europe. Firstly, a webinar will be held for its more than 850 employees by two Italian experts in epilepsy. Professor Federico Vigevano, Director of Neurology and Neurophysiology Department at Bambino Gesù Children’s Hospital in Rome will talk about how to manage prolonged acute convulsive seizures (PACS), and Dr. Nicola Specchio, Head of Rare and Complex Epilepsy Unit at Bambino Gesù Children’s Hospital in Rome will talk about the prognosis of seizures.
“Understanding what the lives of these patients are like will help us find the best treatment and solutions to improve their quality of life. At Neuraxpharm, we are convinced that a greater understanding of epilepsy and the advances in treatments will help improve the quality of life of those who suffer from it. With this type of action, we believe that we can encourage the normalisation of this condition, especially among children and adolescents. This initiative is part of our Corporate Social Responsibility strategy, through which we promote actions that serve to educate and raise awareness about central nervous system disorders and contribute to reducing the stigma that is still associated with them,” said Dr. Jörg-Thomas Dierks, CEO of Neuraxpharm.
Secondly, the company’s employees and collaborators will be invited to actively participate by sharing a photo using the “Life-changing Minutes” image on their personal social networks. With the total number of photos posted, Neuraxpharm will make a donation that will go towards the Italian foundation ‘Fondazione Epilessia LICE’ that supports patients with epilepsy.
About 50 million people suffer from epilepsy around the world5, of which 6 million are in Europe, where 300,000 new cases are diagnosed each year and it is estimated that only 40% receive adequate treatment6.
Prof. Oriano Mecarelli, President of LICE, Department of Human Neuroscience La Sapienza (Rome), said: “In the last year, the world’s scientific community has been forced to focus all its efforts on the fight against Covid-19. As a result, research in Epileptology has stalled and access to funding has become even more problematic. Despite these obstacles, important progress has been made in the treatment of two severe forms of epilepsy: Lennox-Gastaut syndrome and Dravet syndrome, but the road is still uphill, and we must make great efforts to ensure that all epilepsies have a chance of being cured.”
With this initiative, Neuraxpharm wants to work towards the eradication of several myths that persist regarding epilepsy and that contribute to the generation of stigmas surrounding the people who suffer from it.
References
1 Baulac M, et al. Epilepsy priorities in Europe: A report of the ILAE-IBE. Epilepsy Advocacy Europe Task Force. Epilepsia. 2015; 56(11):1687-1695.
2 Beghi E. The Epidemiology of Epilepsy. Neuroepidemiology. 2020;54:185–191
3 GBD 2016 Epilepsy Collaborators. Global, regional, and national burden of epilepsy, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019 Apr;18(4):357-375.
4 WHO, World Health Organization. Epilepsy. Accessed January 2021. Available in: https://www.who.int/news-room/fact-sheets/detail/epilepsy.
5 WHO, World Health Organization. Epilepsy. Accessed January 2021. Available in: https://www.who.int/news-room/fact-sheets/detail/epilepsy.
6 Epilepsy Alliance Europe. Background. Accessed January 2021. Available in: https: //www.epilepsyallianceeurope.org/about/background/.