International Epilepsy Day

Epilepsy Facts vs Myths

Vandenbruaene Nathalie — Fri, 10 Feb 2023 12:44:18 +0000

Epilepsy Facts vs Myths

Andrea Wilkinson, Global Patient Engagement, Global Epilepsy & Rare Syndromes

Vandenbruaene … Fri 10/02/2023 - 13:44

International Epilepsy Day is an important annual event organized by the patient-lead International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), that strives to make a difference in the lives of those living with this condition.

The world can be a challenging and overwhelming place for those diagnosed with epilepsy. This year's campaign focuses on dispelling the stigma, fear, and superstition surrounding epilepsy, by raising awareness of facts instead. Let us create awareness and understanding, busting stigma and misconceptions around epilepsy so that people with epilepsy can live life without feeling excluded or different. With increased knowledge comes greater acceptance across individuals, families, communities – even entire continents! International Epilepsy Day supports courage and resilience; it helps create supportive environments for everyone affected by seizures to be heard loud and proud on a global scale!

Today, many people around the world living with an epilepsy diagnosis are still dealing with the folklore of ancient stories created to try and explain epilepsy before science could explain the cause. Despite epilepsy being one of the most common neurological diseases, affecting an estimated 50 million people worldwide, people living with epilepsy and their families frequently suffer from stigma and discrimination, impairing their quality of life and social wellbeing.

The true nature of epilepsy has also long been distorted by myths, false beliefs, and mistaken notions about the disorder. This misinformation is often driven by lack of disease awareness, leading to lack of access to treatment worldwide and unnecessary embarrassment, shame, and fear. Through ��ֳ�’s long history supporting people living with epilepsy, we’ve witnessed first-hand the daily challenges posed by social stigma surrounding epilepsy. Across geographies and cultures people speak about similar feelings of marginalization and isolation due to their condition.

In less-well served communities and lower-income countries the issues are particularly acute. It is estimated that 80% of people living with epilepsy reside in low-middle income countries, and that over 75% do not receive treatment at all. In these countries’ disbeliefs, stigma, and prejudices, even within the family setting, are some of the major hurdles to diagnosis and treatment.

It's time to spread knowledge, break down barriers, and take a stand against the myths about epilepsy! Let us spread hope by joining in the community call to action to provide people living with epilepsy an equal footing in life, ensuring that they have access to the same opportunities and rights as everyone else. Individuals and families deserve understanding - let’s educate ourselves and those around us so we can create an inclusive environment of respect, empathy and protected human rights for all. Together, we can make sure everyone knows the facts. #EpilepsyFactsvsMyths.

Please share and join in the campaign. Find out more at: International Epilepsy Day | International Epilepsy Charity

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International Epilepsy Day 2021: Reflecting on our journey and stepping into the future of epilepsy

eCMSadmin — Mon, 08 Feb 2021 00:00:00 +0000

International Epilepsy Day 2021: Reflecting on our journey and stepping into the future of epilepsy

Charl Van Zyl, Patient Value Neurology & Europe/International Solutions

eCMSadmin Mon 08/02/2021 - 01:00

Today marks International Epilepsy Day (IED), a special day where people from around the world come together to raise awareness of epilepsy and the challenges faced by patients, their families and carers. Recognized on the second Monday of February every year, this day provides a platform for 65 million people affected worldwide who are living with the disease.

Epilepsy is a chronic brain disorder characterized by recurrent seizures that affects people of all ages. The epilepsies are very heterogenous and consist of several hundred diseases or syndromes, which can lead to a myriad of physical consequences. Greater still, the psychological and social impact of living with epilepsy can be detrimental for a person’s quality of life; particularly in recent times with the isolating consequences of COVID-19. Recent studies indicated that while the risk of COVID-19 in patients with epilepsy is not thought to be higher than in healthy people, psychological stress from COVID-19 has been reported to be greater in people living with epilepsy. As such, initiatives such as IED remain invaluable to raise the profile of the fourth most common neurological condition in the world.

This year’s IED initiative challenged individuals to increase the visibility of epilepsy by taking part in the “50 million steps for epilepsy” walking challenge; a campaign which aims to increase the understanding the journey that people living with the disease take each and every day. The path that patients need to take is often a long one; despite the accessibility of treatments, one-third of newly diagnosed epilepsy patients remained untreated up to three years after their diagnosis. At ��ֳ�, we are committed in reducing this path to seizure control and have been driven to finding a solution for many years.

With over 20 years of research and development of novel anti-epileptic drugs (AEDs), we strive to use expertise, knowledge and resources to improve epilepsy care and meet the diverse needs of people living with the condition. However, despite the significant developments over the years, our team recognizes that more must be done to narrow the treatment gap and improve patient experiences.

“At ��ֳ�, we aspire for better outcomes and experiences to help patients live their ideal lifestyle, striving for freedom of symptoms today and anti-epileptogenic options tomorrow. Our overarching ambition is to provide sustainable patient value via a diverse core of differentiated medicine-based and technology-leveraged solutions that address patient need and deliver better outcomes,” added Alexandre Moreau, Global Head of Epilepsy at ��ֳ�.

While we have taken tremendous steps over the last 20 years, there still remains a long road ahead to deliver the level of care that we aspire to achieve. As such, we find ourselves entering a new era of epilepsy management where new avenues are leading us to alternative solutions. With plenty of work still at hand, we are a passionate to continue our journey in providing the most efficient care for those most in need. Such avenues include:

Partnering to meet unmet needs: Through our investment in Nile AI, Inc., who is developing a digital epilepsy care management platform and bringing together data to make the epilepsy journey predictable, there are future opportunities to acquire insights and data from Nile’s platform.
Delivering scientific innovation: We’re contributing to cutting-edge research in epilepsy that may help pave the way for future treatment options. We’re embracing the convergence of science, medicine and technology by exploring exciting new approaches which, in the future, could provide individually tailored solutions for people with epilepsy.
Sustainable access to treatment: The treatment gap in epilepsy is not a phenomenon confined to developing countries, but an issue that is also prominent in high-income nations, and one that needs to be addressed. We are dedicated to the goal of ensuring that all patients have access to individualized solutions tailored to their individual needs.

As we continue our path to improve experiences for people living with epilepsy, we are excited to be at the forefront of new collaborative solutions to provide the best access of care in one form or another. While many obstacles lie in the path ahead, one thing is for certain, ��ֳ� will be there every step of the way. Keep an eye out on ��ֳ�’s social channels for more insights on our progress in epilepsy management.

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Epilepsy International Epilepsy Day

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Supporting International Epilepsy Day 2020

eCMSadmin — Mon, 10 Feb 2020 08:30:00 +0000

Supporting International Epilepsy Day 2020

Konrad Werhahn, Global Epilepsy Strategy

eCMSadmin Mon 10/02/2020 - 09:30

Today is International Epilepsy Day, a day where people from around the world come together to raise awareness of epilepsy and the challenges faced by patients, their families and carers. Over 65 million people live with epilepsy worldwide yet despite this and the available treatments, public fear and misunderstanding about epilepsy persists and the treatment gap remains high. At ��ֳ�, we are proud to be sponsors of International Epilepsy Day and remain devoted to improving the lives of those affected by epilepsy around the globe. Read on to find out about ��ֳ�’s commitment to epilepsy and our current research on the treatment gap in new onset epilepsy.

In a previous blog post, my colleague Cédric Laloyaux, Global Medical Lead, - Neurology, spoke about how ��ֳ� had embarked on a new global initiative aiming to improve real-world outcomes for people living with epilepsy. Since then, as part of the ��ֳ� Epilepsy Outcomes Project (EOP), the team has continued to collaborate with experts to assess the epilepsy treatment gap. One collaboration, the results of which were published in Neurology, was a retrospective study of newly diagnosed epilepsy patients in the U.S. and the effects the lack of treatment may have on health outcomes. This followed on from an initial editorial piece in The Lancet which highlighted the factors contributing to why people with epilepsy often don’t receive the care they require.

The retrospective analysis found that one-third of newly diagnosed epilepsy patients remained untreated up to three years after their diagnosis. Previous studies have focused on low-income nations and have reported treatment gaps of up to 95%, yet this study strongly suggests that the treatment gap in epilepsy is present not only in developing countries, but also high-income countries where antiepileptic drugs (AEDs) are readily available.

It was found that compared to treated patients, untreated epileptic patients are 20% more likely to encounter a medical event associated with epilepsy such as; burns, falls, fractures, motor accidents and suicidality. Unsurprisingly, patients not receiving treatment for their epilepsy were also at a greater than two-fold increased risk of hospitalizations, and emergency department visits, suggesting that untreated epilepsy results in medical events necessitating increased use of health care resources.

Given the impact on patient outcomes and healthcare resources, such a significant treatment gap should be seen as worrisome. As the authors conclude, the treatment gap in epilepsy is not a phenomenon confined to developing countries, but an issue that is also prominent in high-income nations, and one that needs to be addressed.

This collaboration is one of the first steps in the EOP initiative, which aims to identify and analyse communication gaps between patients and healthcare professionals about epilepsy and epilepsy treatments, factors leading to treatment gaps related to AED selection initiation, and epilepsy diagnosis in emergency departments. Identifying a gap in epilepsy treatment and assessing some of the reasons for this is one step towards improving access to care and quality of life for patients with epilepsy.

��ֳ� remains committed to improving experiences for people with epilepsy and progress towards eradicating the impact of epilepsy around the world. Keep an eye out on ��ֳ�’s Twitter and Facebook pages for more insights on the epilepsy treatment gap.

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Epilepsy The Lancet International Epilepsy Day

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International Epilepsy Day

Epilepsy Facts vs Myths

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International Epilepsy Day 2021: Reflecting on our journey and stepping into the future of epilepsy

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Supporting International Epilepsy Day 2020

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