Epilepsy
Life is merely a fracas on an unmapped terrain, and the universe a geometry stricken with epilepsy - Emile Cioran
image by: GreenVector
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Be cool, don't gawp, go help!
Hey you! welcome! What would you do if you witnessed as seizure? Here's what we would do: Be cool, don't gawp, go help!! Make them safe and protect from injury (obvious reason.) Don't restrain!!! Don't stick anything…
Resources
Digital Health Trial Uses AI For Better Epilepsy Treatment Decisions
Imagine having to choose from over 14,000 different treatment scenarios to decide which drugs might be best for a child or a loved one affected by epilepsy. This is what faces many families according to the experts at Stanford and doc.ai who have announced a new type of clinical trial using artificial intelligence (AI).
Lasers, robots, and tiny electrodes are transforming treatment of severe epilepsy
Technological advances include not only tiny electrodes and lasers, but MRI machines that provide high-resolution images during surgery, and implanted devices that can stop a seizure in its tracks.
Treating Epilepsy’s Toughest Cases
Current medicines fail to relieve seizures in about a third of people with epilepsy. What can be done?
What My Epilepsy Taught Me About the Value of Time
We know more about epilepsy than ever. But I am still trying to reckon with mine.
How One Boy's Fight With Epilepsy Led To The First Marijuana-Derived Pharmaceutical
In 2011, Nussenbaum came across an article in a British medical journal about a small seizure study on rats. The researchers successfully treated the rodents with CBD. "I thought, 'My son needs access to that,' " says Nussenbaum.
Patient Voices: Epilepsy
The World Health Organization estimates that more than 50 million people worldwide have some form of epilepsy, a neurological disorder that is characterized by recurring episodes of seizure. While seizures come in various forms, those with epilepsy cope with similar issues: social stigma, complex treatment options and a feeling of powerlessness. Here, eight men, women and children discuss what it’s like to live with epilepsy.
Use of Cannabidiol in the Treatment of Epilepsy: Efficacy and Security in Clinical Trials
The purpose of this review is to provide an overview of recent clinical trials registered on ClinicalTrial.gov. These trials study the use of different CBD formulation in patients affected by severe forms of drug-resistant epilepsy.
A Risk for Sudden Death in Epilepsy That Often Goes Unmentioned
Sudden death in epilepsy is a little-known and seldom-mentioned phenomenon, but now, after a push by advocates, the federal government has begun a concerted program to understand it. Yet a question remains: When, if ever, should patients be warned?
Childhood Epilepsy
There is nothing worse than watching helplessly as your child has his or her first seizure (we know firsthand) - but good diagnosis and treatment make seizures and epilepsy manageable for parents.
Epilepsy Isn't As Rare As Many Might Think -- And Cases Are Increasing
Epilepsy is among the most expensive and most common chronic conditions in children and teens that has a significant negative impact on quality of life, health and academics.
Epilepsy: sorting the myths from the facts of a common disorder
Although they may coexist, epilepsy is a neurological disorder that doesn’t fall under the umbrella of mental or mood disorders. But the likelihood of mood disorders, such as depression and anxiety, increases with chronic brain illnesses. And there may be a slight further increase if you have epilepsy. People with epilepsy need treatment, but also understanding they are normal, capable people.
Five-in-One Vaccine Carries Small Risk of Seizure
Five-in-One Vaccine Carries Small Risk of Seizure https://www.scientificamerican.com/article/five-in-one-vaccine-carries-small-risk-seizure/ Babies inoculated with a commonly used five-in-one vaccine to protect against a range of potentially lethal childhood diseases face up to a six-fold increased risk of fever-associated seizures on the day they are vaccinated, according to a study of nearly 380,000 Danish children. The latest study is the most thorough large-scale study to date of the risk of febrile seizures following inoculation with the DTaP-IPV-Hib vaccine, which protects against diphtheria, tetanus and pertussis (whooping cough), as well as polio and Haemophilus influenzae type b.
Flip a switch and shut down seizures? New research suggests how to turn off out-of-control signaling in the brain
The ultimate goal of this research is to design treatments that might be able to control inhibitory connections at the axon initial segment. We’d like to be in charge of that switch, able to turn off the out-of-control neural firing seen during an epileptic seizure. I am imagining life with epilepsy, and I am also imagining life without it.
Marijuana Treatment Reduces Severe Epileptic Seizures
A rigorous study validates a cannabis-derived treatment for a rare, drug-resistant childhood epilepsy.
Music Therapy May Hold Promise For Treating Epilepsy
Can listening to Mozart help prevent seizures?
New Epilepsy Tactic: Fight Inflammation
Replacing anticonvulsants is not merely an end in itself. Although they give many epileptics a better quality of life, they do not affect the course of the disease, only its symptoms. Researchers hope that anti-inflammatories may help ameliorate epilepsy’s underlying causes. “Giving a medication that could treat the epilepsy, as opposed to treating the seizure, would be absolutely novel,” Dr. French said.
One Head, Two Brains
How a radical epilepsy treatment in the early 20th century paved the way for modern-day understandings of perception, consciousness, and the self.
Predicting The Future For Africans Living With Epilepsy
I predict an Africa where people who meet people with epilepsy will replace ignorance, fear and discrimination with correct information. They will be knowledgeable about how to give basic first aid; they’ll learn that this condition is not contagious — we can touch you, we can eat with you, we can work with you. They’ll know that a seizure and recovery period may last for 20 minutes but then the person with epilepsy will be back and ready to continue to play their part in the development of this great continent.
What Epilepsy Did
Though my diagnosis of epilepsy, I remained filled with hope. Though the many hospital visits, failed medications, tests, tests, and more tests, realization that there was not yet a cure for epilepsy, I remained and continue to remain steadfast in my faith.
What It's Like to Live with Epilepsy
Once, I sat down on the floor of an art gallery, took off my shoes, and emptied out the entire contents of my bag. I had no recollection of it happening.
When a Song Can Cause a Seizure
Some people with epilepsy have learned to keep track of their triggers, which can range from stress and sleep deprivation to a certain type of music, and to treat the condition by avoiding them.
Some Epilepsy Drugs Linked to Cardiovascular Disease
The researchers used receipt of four consecutive enzyme-inducing antiseizure medications (eiASMs; carbamazepine, eslicarbazepine, oxcarbazepine, phenobarbital, phenytoin, primidone, rufinamide, or topiramate) following an adult-onset (age >18 years) epilepsy diagnosis or repeated exposure in a weighted cumulative-exposure model. The researchers concluded that the hazard of incident cardiovascular disease is greater in patients receiving eiASMs.
Be cool, don't gawp, go help!
What would you do if you witnessed as seizure? Here's what we would do...
Purple Day
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.
SeizureTracker.com
Log and track seizure activity, appointments, and medication schedules through a simple calendar interface from your computer or mobile phone.
CURE
Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.
Epilepsia
Epilepsia is the leading, most authoritative source for current clinical and research results on all aspects of epilepsy. As the journal of the International League Against Epilepsy, subscribers every month will review scientific evidence and clinical methodology...
Epilepsy Foundation
The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.
Epilepsy Society
Our vision is a full life for everyone affected by epilepsy. We want everyone affected by epilepsy to have the best opportunity for a full life — as free from seizures as possible. We set out to make a difference to every person affected by epilepsy whatever their background, however seriously it affects them, and whether they have the condition themselves or are close to someone with epilepsy.
Epilepsy Sucks UK
Welcome To Epilepsy Sucks UK. Formed by two mothers who both have children diagnosed with epilepsy and share the same view: It sucks harder than a Dyson in a black hole! Sallieann Gould & Vicki Evans, have over 20 years experience of life with epilepsy. Distinguishing seizure types, treatment options, navigating the education and health care system, cutting through the jargon, keeping our ears to the ground to find the latest information and solutions ,sharing safety tips and spreading the word that Epilepsy Sucks.
Epilepsy Warriors
Sudden Unexplained Death in Epilepsy [SUDEP] accounts for 10% of all Epilepsy-related deaths; 85% of these fatalities occur between the ages of 20 -50. The Epilepsy Warriors Foundation feels it is important to reach out to as many people and companies as possible to help raise awareness for a devastating disease one that has claimed so many of our children and young people. We hope that you will join us in our efforts to improve the quality of life for those afflicted with and by this complicated disorder.
EpilepsyGenetics.net
Epilepsies or seizure disorders are common diseases of the brain. Many types of epilepsies have a genetic etiology. Finding these genes and characterizing them will lead to insights about the physiology of epilepsies and -hopefully- novel treatment options. In our blog “Beyond the Ion Channel”, we try to make our research more understandable, digestable and interpretable.
International Bureau for Epilepsy
The International Bureau for Epilepsy (IBE) was established in 1961 as an organisation of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. The IBE addresses such social problems as education, employment, insurance, driving licence restrictions and public awareness. The Bureau also works in close liaison with the International League against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy.
International League Against Epilepsy
The International League Against Epilepsy (ILAE) was founded in 1909 and is an organisation of more than 100 national chapters. The goals of the ILAE are: -To advance and disseminate knowledge about epilepsy -To promote research, education and training -To improve services and care for patients, especially by prevention, diagnosis and treatment
Living Well With Epilepsy
Living Well With Epilepsy is a leading epilepsy blog that covers the full spectrum of issues faced by people living with all types of seizure disorders. We aim to inspire people living with epilepsy through a unique mix of news, personal stories, commentary, interviews, guest posts, and forums.
National Association of Epilepsy Centers
The primary objectives of NAEC are to connect people with epilepsy to specialized epilepsy care, and to support epileptologists and administrators in the operation of their epilepsy centers. Founded in 1987 by physician leaders committed to setting a national agenda for quality epilepsy care, the NAEC educates public and private policymakers, and regulators about appropriate patient care standards, reimbursement and medical services policies. NAEC works in conjunction with existing scientific and charitable epilepsy organizations.
Young Epilepsy
Young Epilepsy is a national charity with over 100 years' experience as a centre of expertise for all young people with epilepsy and other neurological conditions.
American Epilepsy Society
The American Epilepsy Society is one of the oldest neurological professional organizations in this country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy.
Canadian Epilepsy Alliance
The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families, through support services, information, advocacy, and public awareness.
Charlie Foundation
The Charlie Foundation to Help Cure Pediatric Epilepsy was founded in 1994 after twenty month old Charlie Abrahams, having endured multiple daily seizures, and failed every available anti-convulsant drug and one brain surgery, was cured of his epilepsy by the ketogenic diet at Johns Hopkins Hospital. The diet was undertaken despite resistance from the five pediatric neurologists he had seen. When Charlie's parents realized that Charlie was but one of hundreds of thousands of children whose families were either not being informed, or being misinformed about dietary therapy, they started The Charlie Foundation...
Epilepsy Action Australia
Beginning in 1952 as a local association, Epilepsy Action Australia has developed into the largest provider of specialist epilepsy services in the community for people with epilepsy and other seizure disorders, their carers, families and the broader community.
Epilepsy Australia
Epilepsy Australia is the national coalition of Australian Epilepsy Associations raising our voices as one to advance the cause of all Australians living with epilepsy. Actively delivering counseling, support and information to all who access our services, Epilepsy Australia is committed to raising awareness and understanding of the very real issues faced by those living with epilepsy.
Epilepsy Canada
Epilepsy Canada is a non-profit organization whose mission is to enhance the quality of life for persons affected by epilepsy through promotion and support of research and facilitation of education and awareness initiatives that build understanding and acceptance of epilepsy. Epilepsy Canada is governed by a national board with national representation. Partner associations of Epilepsy Canada provide direct services to those with epilepsy and their families.
Epilepsy New Zealand
Established since 1956 Epilepsy New Zealand has grown from one Branch to 15. The first ‘Epilepsy Week’ was held in 1971 and in 1977 the Association launched its emphasis on field-work. Epilepsy New Zealand continues to develop it services to meet the demands of its clients and members. As a result, individuals, friends and family can feel more confident that they will not be considered disadvantaged by having epilepsy.
Serene's Epilepsy Legacy
I have been an epilepsy advocate for 13 years. It is extremely difficult and challenging for an individual to promote epilepsy awareness single handedly but it is not totally impossible. Through promoting epilepsy awareness I had come to know of some wonderful and inspiring people whom I look up to and who had opened doors for me to reach out to the public. My family members and good friends have always been my main driving force to excel in my advocacy work. Roughly 50 million people worldwide have epilepsy. Epilepsy is 3 times more common than multiple sclerosis and more than 3 times as common as Parkinson's disease and cerebral palsy. One person in 50 will develop epilepsy at some time in their life. One in 20 will have a single epileptic seizure.
Singapore Epilepsy Foundation
Singapore Epilepsy Foundation is the Singapore Chapter of the International Bureau for Epilepsy. Our main objective is to improve the quality of life of people with epilepsy. SEF website will provide you with relevant information regarding epilepsy and seeks to keep people with epilepsy updated with the latest developments in the field.
The Art of Living with Epilepsy
The Art of Living with Epilepsy http://jade-epilepsymynewlife.blogspot.com/ This blog is aimed at throwing the spot light on everyday life with a diagnosis of Epilepsy purely from a patients point of view. A diary open to anyone who wishes to read it. Mixed in every now and again with facts, figures and ways to help I have sourced. I am a firm believer that it really is the little things that matter in life. So while a diagnosis of Epilepsy is the bigger picture, it is how it effects the little things in daily life that may otherwise be overlooked that becomes important. Hopefully a little advice on how to deal with these smaller aspects that may have to be altered will go along way. For just one person to read a little bit of an honest blog and realise that inevitably life will change but it's how you deal with these changes that becomes vital, is my little wish.
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