Epileptics Are Affected by Flashing Lights ~ Cutting-Edge Projects in 15 Countries Around Our Mission: Only the World in Their Search for a Cure

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Epileptics Are Affected by Flashing Lights ~ Cutting-Edge Projects in 15 Countries Around Our Mission: Only the World in Their Search for a Cure

The REAL Project Research & Epilepsy Awareness Shona Sulzbach What is Epilepsy: What to do if you see someone having a seizure: - Epilepsy is a neurological disorder that presents - Time the seizure. itself in the form of a seizure. - Remain calm - A person must have more than one seizure to be - Stay with the person until the seizure ends and diagnosed with epilepsy. they are fully awake. - Epilepsy does not discriminate and 1/26 people - Comfort the person as they regain full will develop a seizure disorder in their life. Consciousness. Types of Epilepsy: Only call 911 if: - There are two broad categories: generalized - The person has not had a seizure before. and focal. - The seizure lasts longer than 5 minutes. - Not all seizures present themselves with the loss - The person is hurt during the seizure. of consciousness and convulsions. - The seizure occurred in water. - Many seizure disorders include types of seizures - The person has difficulty walking or breathing where the person goes into “a trance”. after the seizure ends. What is CURE? - The person has another seizure just after the What Causes Epilepsy: - Citizens United for Research in Epilepsy (CURE) first - Genetics, brain injury or trauma, and/or is a nonprofit organization that works to One. structural changes (tumors, growths, nerve promote epilepsy research. damage). - It was founded in 1998 by Susan Axelrod and a DO NOT: - About half of all people diagnosed with epilepsy small group of parents of children with - Hold the person down or try to stop the seizure. do not know the cause. epilepsy. - Try to open/put anything in the person’s mouth. - Since then, CURE has raised more than $50 - Try to give mouth-to-mouth. million to fund epilepsy research - Give the person food or water until after they Myth Buster:: - CURE funds grants for young and established are - A person having a seizure can swallow their investigators fully alert. tongue ~ it is impossible to swallow your tongue. - To date, CURE has awarded more than 200 - All epileptics are affected by flashing lights ~ cutting-edge projects in 15 countries around Our Mission: only the world in their search for a cure. - Raise epilepsy awareness about 3% of epileptics are affected by flashing - Initiatives CURE currently funds: - Bust some of the many misconceptions of lights (Photosensitive Epilepsy). Epilepsy Genetics Initiative (EGI) epilepsy and its causes. - All seizures cause you to jerk ~ there are many Post-Traumatic Epilepsy - Fundraise for CURE types of seizures and not all of them cause Sudden Unexpected Death in Epilepsy Epilepsy remains one of the most Convulsions and loss of consciousness . (SUDEP) underfunded health conditions Infantile Spasm Initiative Our Goal: - We are striving to raise $2,000 for the CURE References: foundation to continue their efforts in finding - Epilepsy Society ~ www.epilepsysociety.org.uk the causes and cure for epilepsy. - CURE ~ www.cureepilepsy.org - We appreciate any and all help we can get! - National Institute of Neurological Disorders and Stroke ~ www.ninds.nih.gov Please donate online at - Centers for Disease Control and Prevention ~ http://cureep.convio.net/goto/goreal www.cdc.gov.

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Therapeutic Class Overview Anticonvulsants
Therapeutic Class Overview Anticonvulsants INTRODUCTION Epilepsy is a disease of the brain defined by any of the following (Fisher et al 2014): ○ At least 2 unprovoked (or reflex) seizures occurring > 24 hours apart; ○ 1 unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after 2 unprovoked seizures, occurring over the next 10 years; ○ Diagnosis of an epilepsy syndrome. Types of seizures include generalized seizures, focal (partial) seizures, and status epilepticus (Centers for Disease Control and Prevention [CDC] 2018, Epilepsy Foundation 2016). ○ Generalized seizures affect both sides of the brain and include: . Tonic-clonic (grand mal): begin with stiffening of the limbs, followed by jerking of the limbs and face . Myoclonic: characterized by rapid, brief contractions of body muscles, usually on both sides of the body at the same time . Atonic: characterized by abrupt loss of muscle tone; they are also called drop attacks or akinetic seizures and can result in injury due to falls . Absence (petit mal): characterized by brief lapses of awareness, sometimes with staring, that begin and end abruptly; they are more common in children than adults and may be accompanied by brief myoclonic jerking of the eyelids or facial muscles, a loss of muscle tone, or automatisms. ○ Focal seizures are located in just 1 area of the brain and include: . Simple: affect a small part of the brain; can affect movement, sensations, and emotion, without a loss of consciousness . Complex: affect a larger area of the brain than simple focal seizures and the patient loses awareness; episodes typically begin with a blank stare, followed by chewing movements, picking at or fumbling with clothing, mumbling, and performing repeated unorganized movements or wandering; they may also be called “temporal lobe epilepsy” or “psychomotor epilepsy” .
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Epilepsy and Communication
fasic England Gloss ry Epilepsy and communication Epilepsy is a chronic disorder of the brain • Temporal Lobe epilepsy characterised by recurrent seizures, which affects • Dravet syndrome people worldwide (WHO, 2016). The World Health Organisation deKnes a seizure as a transient loss of There are a range of communication difficulties function of all or part of the brain due to excessive associated with epilepsy. For some people, electrical discharges in a group of brain cells. Physical, communication difficulties can become more sensory or other functions can be temporarily lost. pronounced at times immediately before, during or after seizure activity. Epilepsy affects 1 in 177 young people under the age of 25 so there are around 112,000 young people with Communication difficulties may include: epilepsy in the UK (Joint Epilepsy Council, 2011). In 75% • Comprehension difficulties: Children may Knd it of people, seizures are well controlled with medication hard to understand what others are saying to but 25% continue to have seizures despite treatment. them or what is expected of them, and may struggle to understand environmental cues, daily Epilepsy can be linked with learning, behavioural and routines or activity sequences. speech and language difficulties. This is increasingly • Attention and listening difficulties: Children recognised and the risks are greater if epilepsy occurs may have difficulties in attending to spoken before 2 years of age. Parkinson (1994) found that language, or to an activity. from a small study of children referred for assessment of their epilepsy, 40% had undiagnosed language • Expressive difficulties: It may be hard for impairment of varying degrees of severity.
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14582 IBE Newsletter 2003
International Bureau for Epilepsy Annual Report 2003 Setting the Standard From Our Vision IBE has a vision of the world where everywhere ignorance and fear about epilepsy are replaced by understanding and care. Our Mission IBE exists to improve the social condition and quality of life of people with epilepsy and those who care for them. Our Goals • ORGANISATION To provide an international umbrella organisation for national epilepsy organisations whose primary purpose is to improve the social condition and quality of life of people with epilepsy and those who care for them. • SUPPORT To provide a strong global network to support the development of new Chapters, to support existing Chapters to develop to their fullest potential and to encourage co-operation and contact between Chapters. • COMMUNICATION To promote the facts about epilepsy and to communicate IBE’s vision, mission and messages to the widest possible audience. • EDUCATION To increase understanding and knowledge of epilepsy. • REPRESENTATION To provide an international and global platform for the representation of epilepsy. 2 International Bureau for Epilepsy Foreward During my fifteen years working, first in the British Parliament and Government and now in the European Parliament, I have seen and welcomed an ever-increasing awareness of the importance and benefits of strong partnerships. Networks and alliances are more than just “buzz words” – they are proven methods of achieving desired goals. They may not be easy to achieve, but, once in place, they make it simpler for patients, carers, professionals and academics to explain health needs and options for action and they make it easier for policy-makers to listen and to understand what is needed.
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Best Practice Guidelines for Training
Best practice guidelines for training professional carers in the administration of Buccal (Oromucosal) Midazolam for the treatment of prolonged and / or clusters of epileptic seizures in the community Safe & Effective | Kind & Caring | Exceeding Expectation Epilepsy Nurses Association (ESNA) June 2019 1. Foreword One of the most important components of epilepsy care is the pre-hospital community management of prolonged or repeated seizures, which, if untreated, can increase the risk of status epilepticus. Convulsive status epilepticus is a medical emergency requiring admission to hospital and has a mortality rate of up to 20 per cent. Effective management of seizures in the community in people at high risk of status epilepticus could significantly reduce mortality, morbidity and emergency health care utilisation. The Joint Epilepsy Council issued guidance until it was disbanded in 2015, leaving a vacuum in the review and update of clinical guidelines. Unfortunately, the clinical processes ensuring the safety and consistency of buccal midazolam usage demonstrates considerable heterogeneity. There are no current guidelines, standards or pathways to ensure the safety of all involved in the process i.e. patient, carer or professional. ESNA is an organisation principally formed by nurses with an interest in epilepsy. Most ESNA members support or complete training for buccal midazolam to ensure core competencies are up to date and patient safety is protected. ESNA is joined by the International League Against Epilepsy (British Chapter) and the Royal College of Psychiatrists (ID Faculty) as the other principal specialist clinical stakeholders with an interest to ensure governance in this complex care area is addressed robustly. ESNA has collaborated with the ILAE and the Royal College of Psychiatrists to produce updated buccal midazolam guidance.
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Fenfluramine Hydrochloride for the Treatment of Seizures in Dravet Syndrome: a Randomised, Double-Blind, Placebo-Controlled Trial
Articles Fenfluramine hydrochloride for the treatment of seizures in Dravet syndrome: a randomised, double-blind, placebo-controlled trial Lieven Lagae*, Joseph Sullivan*, Kelly Knupp, Linda Laux, Tilman Polster, Marina Nikanorova, Orrin Devinsky, J Helen Cross, Renzo Guerrini, Dinesh Talwar, Ian Miller, Gail Farfel, Bradley S Galer, Arnold Gammaitoni, Arun Mistry, Glenn Morrison, Michael Lock, Anupam Agarwal, Wyman W Lai, Berten Ceulemans, for the FAiRE DS Study Group Summary Background Dravet syndrome is a rare, treatment-resistant developmental epileptic encephalopathy characterised by Published Online multiple types of frequent, disabling seizures. Fenfluramine has been reported to have antiseizure activity in December 17, 2019 observational studies of photosensitive epilepsy and Dravet syndrome. The aim of the present study was to assess the https://doi.org/10.1016/ S0140-6736(19)32500-0 efficacy and safety of fenfluramine in patients with Dravet syndrome. See Online/Comment https://doi.org/10.1016/ Methods In this randomised, double-blind, placebo-controlled clinical trial, we enrolled children and young adults S0140-6736(19)31239-5 with Dravet syndrome. After a 6-week observation period to establish baseline monthly convulsive seizure *Contributed equally frequency (MCSF; convulsive seizures were defined as hemiclonic, tonic, clonic, tonic-atonic, generalised tonic- Department of Paediatric clonic, and focal with clearly observable motor signs), patients were randomly assigned through an interactive web Neurology, University of response system in a 1:1:1 ratio to placebo, fenfluramine 0·2 mg/kg per day, or fenfluramine 0·7 mg/kg per day, Leuven, Leuven, Belgium (Prof L Lagae MD); University of added to existing antiepileptic agents for 14 weeks.
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September 2019 Research Quarterly
THINK BIG RESEARCH Q UARTER LY ISSUE 11: SEPTEMBER 2019 MY SEIZURE GAUGE EPILEPSY LEARNING HEALTHCARE SYSTEM SUDEP INSTITUTE INNOVATOR SPOTLIGHT FOUNDATION AWARDEES IN THE NEWS WELCOME Every year, the Epilepsy Foundation hosts a leadership conference that brings together local Epilepsy Foundations to share best practices from the network. This year’s theme is “THINK BIG.” I love this theme as it perfectly captures our strategic planning approach. We think big, so that we can act big, to make meaningful change today that will bring hope for tomorrow. TO CELEBRATE THE THINK BIG THEME, we will be In 1997, Apple launched their Think Different campaign, devoting this fall issue to the ways that we are thinking which brought new life into a company that would go on big – from driving therapeutic innovations, to changing to help reshape how we interact with technology. The outcomes, and saving lives. On page 4, you can learn full text of the ad is below: about the exciting progress of the My Seizure Gauge team, an international consortium working together to create a seizure forecasting device that could assess “Here’s to the crazy ones. The misfits. The rebels. The the chance of seizures like a weather forecast. On page troublemakers. The round pegs in the square holes. The 6, you can learn about our leadership of the Epilepsy ones who see things differently. They’re not fond of rules Learning Healthcare System, a new model to transform and they have no respect for the status quo. You can the healthcare system. On page 7, you can learn more quote them, disagree with them, glorify or vilify them.
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Neurodiagnostics Referral Form
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Epilepsy & My Child Toolkit
Epilepsy & My Child Toolkit A Resource for Parents with a Newly Diagnosed Child 136EMC Epilepsy & My Child Toolkit A Resource for Parents with a Newly Diagnosed Child “Obstacles are the things we see when we take our eyes off our goals.” -Zig Ziglar EPILEPSY & MY CHILD TOOLKIT • TABLE OF CONTENTS Introduction Purpose .............................................................................................................................................5 How to Use This Toolkit ....................................................................................................................5 About Epilepsy What is Epilepsy? ..............................................................................................................................7 What is a Seizure? .............................................................................................................................8 Myths & Facts ...................................................................................................................................8 How is Epilepsy Diagnosed? ............................................................................................................9 How is Epilepsy Treated? ..................................................................................................................10 Managing Epilepsy How Can You Help Manage Your Child’s Care? ...............................................................................13 What Should You Do if Your Child has a Seizure? ............................................................................14
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A Rare Cause of Unexplained Abdominal Pain
Open Access Case Report DOI: 10.7759/cureus.10120 Abdominal Epilepsy: A Rare Cause of Unexplained Abdominal Pain Anvesh Balabhadra 1 , Apoorva Malipeddi 2 , Niloufer Ali 3 , Raju Balabhadra 4 1. Department of Neurology, Gandhi Medical College and Hospital, Hyderabad, IND 2. Department of Internal Medicine, Gandhi Medical College and Hospital, Hyderabad, IND 3. Department of Neurology, Aster Prime Hospital, Hyderabad, IND 4. Department of Neurological Surgery, Aster Prime Hospital, Hyderabad, IND Corresponding author: Anvesh Balabhadra, [email protected] Abstract Abdominal epilepsy (AE) is a very rare diagnosis; it is considered to be a category of temporal lobe epilepsies and is more commonly a diagnosis of exclusion. Demographic presentation of AE is usually in the pediatric age group. However, there is recorded documentation of its occurrence even in adults. AE can present with unexplained, relentless, and recurrent gastrointestinal symptoms such as paroxysmal pain, nausea, bloating, and diarrhoea that improve with antiepileptic therapy. It is commonly linked with electroencephalography (EEG) changes in the temporal lobes along with symptoms that reflect the involvement of the central nervous system (CNS) such as altered consciousness, confusion, and lethargy. Due to the vague nature of these symptoms, there is a high chance of misdiagnosing a patient. We present the case of a 20-year-old man with AE who was misdiagnosed with psychogenic abdominal pain after undergoing multiple investigations with various hospital departments. Categories: Neurology, Gastroenterology, General Surgery Keywords: eeg, abdominal epilepsy, temporal lobe epilepsy, unexplained abdominal pain Introduction Abdominal epilepsy (AE) is a rare syndrome, even rarer when seen in adults and presents with paroxysmal symptoms favouring an abdominal pathology that result from seizure activity [1].
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September | 2013 ISSN 1660-3656 Epileptologie | 30. Jahrgang
Epileptologie | 30. Jahrgang September | 2013 ISSN 1660-3656 Epilepsie-Liga Seefeldstrasse 84 Postfach 1084 CH-8034 Zürich Redaktionskommission Thomas Dorn | Zürich Reinhard E. Ganz | Zürich Martinus Hauf | Tschugg Hennric Jokeit | Zürich Christian M. Korff | Genève Günter Krämer | Zürich (Vorsitz) Inhalt Oliver Maier | St. Gallen Andrea O. Rossetti | Lausanne Stephan Rüegg | Basel Kaspar Schindler | Bern Editorial 147 – 149 Serge Vulliémoz | Genève Combination of Electroencephalographic and Magnetic Resonance Imaging to Beirat Characterize Epileptic Networks Christoph M. Michel 150 – 157 Alexandre Datta | Basel Thomas Grunwald | Zürich Structure, Function and Genes: Christian W. Hess | Bern What Can We Learn from MRI Anna Marie Hew-Winzeler | Zürich Giorgi Kuchukhidze, Eugen Trinka 158 – 166 Günter Krämer | Zürich Theodor Landis | Genève Hereditäre epileptische Enzephalopathie Malin Maeder | Lavigny mit Amelogenesis imperfecta Klaus Meyer | Tschugg Kohlschütter-Tönz-Syndrom Christoph Michel | Genève (KTZS). Bericht über einen weiteren, Christoph Pachlatko | Zürich posthum erfassten Patienten aus der Monika Raimondi | Lugano Zentralschweiz. Andrea O. Rossetti | Lausanne Otmar Tönz, Bernhard Steiner, Anna Stephan Rüegg | Basel Schossig, Johannes Zschocke, Markus Schmutz | Basel Alfried Kohlschütter 167– 174 Margitta Seeck | Genève Urs Sennhauser | Hettlingen Epilepsie-Liga-Mitteilungen 175 – 198 Franco Vassella | Bremgarten Kongresskalender 199 – 200 Schweizerische Liga gegen Epilepsie Ligue Suisse contre l’Epilepsie Lega Svizzera contro l’Epilessia Swiss League Against Epilepsy Richtlinien für die Autoren Allgemeines - Zusammenfassung, Résumé und englischer Ab- stract (mit Titel der Arbeit): Ohne Literaturzitate Epileptologie veröffentlicht sowohl angeforderte als und Akronyme sowie unübliche Abkürzungen (je auch unaufgefordert eingereichte Manuskripte über maximal 250 Wörter). alle Themen der Epileptologie. Es werden in der Regel - Text: Dabei bei Originalarbeiten Gliederung in Ein- nur bislang unveröffentlichte Arbeiten angenommen.
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Research Quarterly
RESEARCH Q UARTER LY ISSUE 10: JUNE 2019 Shark Tank Awards Innovator Spotlight Series NextGen Scientist Awards Clinical Trials THERE ARE NO RULES“ HERE – WE’RE TRYING TO ACCOMPLISH SOMETHING – THOMAS A. EDISON” WELCOME LETTER With thirty to forty percent of those living with epilepsy being treatment resistant and living with persistent seizures, something radical needs to be done. We need to find new therapies and new innovations that revolutionize the diagnosis, care and treatment of epilepsy. In the June Research Quarterly, you’ll meet entrepreneurs who participated in our Shark Tank event, our early career awardees representing the next generation of scientists, and parents who started companies to tackle challenges that their families are facing. The creativity and problem-solving capabilities of our community are amazing. Through the Research and New Therapies programs, we are creating opportunities for our community to put those problem- solving capabilities to work. The Foundation is building a stellar track record in supporting epilepsy solutions getting to market. In the last two years alone, five products that received seed funding by the Foundation have reached the marketplace and received regulatory approval including UNEEG Medical (CE approved 2019), Embrace (FDA approved December 2018), Epidiolex® (FDA approved July 2018), Visualase (FDA approved April 2018) and Zeto (FDA approved April 2018). However, our work is not done. As Thomas Edison, arguably one of the most prolific inventors of the last century, once said, “There are no rules here – we’re trying to accomplish something”. If you have a unique solution that could transform the epilepsy community, we want to hear from you.
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Infantile Spasms: an Update on Pre-Clinical Models and EEG Mechanisms
children Review Infantile Spasms: An Update on Pre-Clinical Models and EEG Mechanisms Remi Janicot, Li-Rong Shao and Carl E. Stafstrom * Division of Pediatric Neurology, The Johns Hopkins University School of Medicine, Baltimore, MD 21287, USA; [email protected] (R.J.); [email protected] (L.-R.S.) * Correspondence: [email protected]; Tel.: +1-(410)-955-4259; Fax: +1-(410)-614-2297 Received: 19 November 2019; Accepted: 23 December 2019; Published: 6 January 2020 Abstract: Infantile spasms (IS) is an epileptic encephalopathy with unique clinical and electrographic features, which affects children in the middle of the first year of life. The pathophysiology of IS remains incompletely understood, despite the heterogeneity of IS etiologies, more than 200 of which are known. In particular, the neurobiological basis of why multiple etiologies converge to a relatively similar clinical presentation has defied explanation. Treatment options for this form of epilepsy, which has been described as “catastrophic” because of the poor cognitive, developmental, and epileptic prognosis, are limited and not fully effective. Until the pathophysiology of IS is better clarified, novel treatments will not be forthcoming, and preclinical (animal) models are essential for advancing this knowledge. Here, we review preclinical IS models, update information regarding already existing models, describe some novel models, and discuss exciting new data that promises to advance understanding of the cellular mechanisms underlying the specific EEG changes seen in IS—interictal hypsarrhythmia and ictal electrodecrement. Keywords: infantile spasms; West syndrome; epilepsy; childhood; epileptic encephalopathy; electroencephalogram (EEG); hypsarrhythmia; electrodecrement; animal model 1. Introduction Epileptic encephalopathies (EEs) are a spectrum of disorders that mostly begin during infancy and have poor neurological and behavioral outcomes.
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