Epilepsy Society

Last updated
Epilepsy Society
TypeCharitable organisation
Registration no.206186
Location
  • Chesham Lane, Chalfont St Peter, Buckinghamshire SL9 0RJ, UK
Website www.epilepsysociety.org.uk
Formerly called
The National Society for Epilepsy

The Epilepsy Society (formerly known as the National Society for Epilepsy) is the largest medical charity in the field of epilepsy in the United Kingdom, providing services for people with epilepsy for over 100 years. Based in Chalfont St Peter, Buckinghamshire, UK, its stated mission is "to enhance the quality of life of people affected by epilepsy by promoting research, education and public awareness and by delivering specialist medical care and support services." The Epilepsy Society has close partnerships with the National Hospital for Neurology and Neurosurgery and the UCL Institute of Neurology, both located in Queen Square, London.

Contents

Services

Epilepsy Society is a leading epilepsy medical charity supporting all people affected by epilepsy. The services provided by the charity include:

History

Passmore Edwards House, part of Chalfont Centre Passmore Edwards House, Chalfont Centre - geograph.org.uk - 124557.jpg
Passmore Edwards House, part of Chalfont Centre

In 1892, a group of physicians from National Hospital for the Paralysed and the Epileptic, together with various philanthropists, founded the National Society for the Employment of Epileptics. [7] The first executive committee of the Society included the notable physicians John Hughlings Jackson, Sir William Gowers, and David Ferrier. The aim was to establish an agricultural colony where people with epilepsy could live and work. A 370-acre (1.5 km2) farm was bought in Chalfont St Peter which at its peak in the 1950s, cared for over 550 people. [1]

A National Health Service treatment unit was established at Chalfont in 1972. [1] Around this time, the Society became known as The National Society for Epilepsy (NSE). [8]

In 1995 a 1.5 tesla MRI scanner was installed - the first dedicated to research in epilepsy. This has now been superseded by a 3 tesla instrument in 2004, which produces higher resolution images. The NSE's MRI Unit is at the forefront of medical imaging research applied to epilepsy. In 2011 the charity changed its name to Epilepsy Society. [8]

Online safety

In April 2019, the Epilepsy Society launched a campaign to ban so-called epilepsy trolling, where online trolls target people with epilepsy, sending them flashing images and GIFs with the intent of triggering a seizure. [9]

Following a large-scale attack on people with epilepsy in May 2020, including an 8 year old charity fundraiser named Zach Eagling, the Epilepsy Society titled the campaign "Zach's Law." [10]

After it emerged that no existing legislation specifically criminalised this type of trolling, the Zach's Law campaign was endorsed by the Law Commission (England and Wales), [11] featured on the front cover of the Daily Express [12] and in the Metro (British newspaper). [13]

MPs including Dean Russell, [14] Suzanne Webb, [15] Kim Leadbeater [16] and John Nicolson [17] backed the campaign and met with Zach on several occasions.

On the 5th December 2022, Zach's Law was officially included in the Government's Online Safety Bill and became law in September 2023 when the Bill completed its passage through Parliament. [18] The law will criminalise the deliberate sending of flashing images to a person with epilepsy with the intent of triggering a seizure, and offenders could face up to five years in jail. [19]

Related Research Articles

<span class="mw-page-title-main">Epilepsy</span> Group of neurological disorders causing seizures

Epilepsy is a group of non-communicable neurological disorders characterized by recurrent epileptic seizures. An epileptic seizure is the clinical manifestation of an abnormal, excessive, and synchronized electrical discharge in the brain cells called neurons. The occurrence of two or more unprovoked seizures defines epilepsy. The occurrence of just one seizure may warrant the definition in a more clinical usage where recurrence may be able to be prejudged. Epileptic seizures can vary from brief and nearly undetectable periods to long periods of vigorous shaking due to abnormal electrical activity in the brain. These episodes can result in physical injuries, either directly such as broken bones or through causing accidents. In epilepsy, seizures tend to recur and may have no immediate underlying cause. Isolated seizures that are provoked by a specific cause such as poisoning are not deemed to represent epilepsy. People with epilepsy may be treated differently in various areas of the world and experience varying degrees of social stigma due to the alarming nature of their symptoms.

<span class="mw-page-title-main">Seizure</span> Period of symptoms due to excessive or synchronous neuronal brain activity

An epileptic seizure, informally known as a seizure, is a period of symptoms due to abnormally excessive or synchronous neuronal activity in the brain. Outward effects vary from uncontrolled shaking movements involving much of the body with loss of consciousness, to shaking movements involving only part of the body with variable levels of consciousness, to a subtle momentary loss of awareness. These episodes usually last less than two minutes and it takes some time to return to normal. Loss of bladder control may occur.

A convulsion is a medical condition where the body muscles contract and relax rapidly and repeatedly, resulting in uncontrolled shaking. Because epileptic seizures typically include convulsions, the term convulsion is often used as a synonym for seizure. However, not all epileptic seizures result in convulsions, and not all convulsions are caused by epileptic seizures. Non-epileptic convulsions have no relation with epilepsy, and are caused by non-epileptic seizures.

Photosensitive epilepsy (PSE) is a form of epilepsy in which seizures are triggered by visual stimuli that form patterns in time or space, such as flashing lights; bold, regular patterns; or regular moving patterns. PSE affects approximately one in 4,000 people.

<span class="mw-page-title-main">National Hospital for Neurology and Neurosurgery</span> Hospital in London, England

The National Hospital for Neurology and Neurosurgery is a neurological hospital in Queen Square, London. It is part of the University College London Hospitals NHS Foundation Trust. It was the first hospital to be established in England dedicated exclusively to treating the diseases of the nervous system. It is closely associated with University College London (UCL) and in partnership with the UCL Institute of Neurology, which occupies the same site, is a major centre for neuroscience research.

<span class="mw-page-title-main">Ruben Kuzniecky</span>

Ruben Kuzniecky is a neurologist scientist who is Vice-chair academic affairs and professor of neurology at Northwell Health specializing in the field of epilepsy, epilepsy surgery and neuro-imaging.

Josemir W. Sander, also known as Ley Sander, is a Professor of Neurology and Clinical Epilepsy, and the head of Department of Clinical and Experimental Epilepsy, at UCL Queen Square Institute of Neurology. He is also a Professor of Neurology at West China Hospital, Sichaun University in Chengdu, China.

Psychogenic non-epileptic seizures (PNES), which have been more recently classified as functional seizures, are events resembling an epileptic seizure, but without the characteristic electrical discharges associated with epilepsy. PNES fall under the category of disorders known as functional neurological disorders (FND), also known as conversion disorders. These are typically treated by psychologists or psychiatrists. PNES has previously been called pseudoseizures, psychogenic seizures, and hysterical seizures, but these terms have fallen out of favor.

Reflex seizures are epileptic seizures that are consistently induced by a specific stimulus or trigger making them distinct from other epileptic seizures, which are usually unprovoked. Reflex seizures are otherwise similar to unprovoked seizures and may be focal, generalized, myoclonic, or absence seizures. Epilepsy syndromes characterized by repeated reflex seizures are known as reflex epilepsies. Photosensitive seizures are often myoclonic, absence, or focal seizures in the occipital lobe, while musicogenic seizures are associated with focal seizures in the temporal lobe.

Frontal lobe epilepsy (FLE) is a neurological disorder that is characterized by brief, recurring seizures arising in the frontal lobes of the brain, that often occur during sleep. It is the second most common type of epilepsy after temporal lobe epilepsy (TLE), and is related to the temporal form in that both forms are characterized by partial (focal) seizures.

<span class="mw-page-title-main">Frederick Andermann</span> Canadian neurologist and epileptologist (1930–2019)

Frederick Andermann was a Canadian neurologist and epileptologist.

The Epilepsy Foundation, also Epilepsy Foundation of America (EFA), is a non-profit national foundation, headquartered in Bowie, Maryland, dedicated to the welfare of people with epilepsy and seizure disorders. The foundation was established in 1968 and now has a network of 59 affiliates. The foundation's programs aim to "ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services."

Epilepsy and driving is a personal and public safety issue. A person with a seizure disorder that causes lapses in consciousness may put themselves and the public at risk if a seizure occurs while they are operating a motor vehicle. Not only can a seizure itself cause a car wreck, but anticonvulsants often have side effects that include drowsiness. People with epilepsy are more likely to be involved in a traffic collision than people who do not have the condition, although reports range from minimally more likely up to seven times more likely.

Fritz E. Dreifuss, MD was a German-born, New Zealand-educated, American neurologist and subspecialist in epilepsy based at the University of Virginia in Charlottesville, Virginia, US.

Generally, seizures are observed in patients who do not have epilepsy. There are many causes of seizures. Organ failure, medication and medication withdrawal, cancer, imbalance of electrolytes, hypertensive encephalopathy, may be some of its potential causes. The factors that lead to a seizure are often complex and it may not be possible to determine what causes a particular seizure, what causes it to happen at a particular time, or how often seizures occur.

Orrin Devinsky is an American neurologist who is the Director of the NYU Comprehensive Epilepsy Center and the Saint Barnabas Institute of Neurology and Neurosurgery (INN). He is also a professor of Neurology, Neurosurgery, and Psychiatry at NYU Langone School of Medicine. Devinsky specializes in epilepsy and behavioral neurology.

The Mischer Neuroscience Institute is a combined research and education effort between the Vivian L. Smith Department of Neurosurgery and the Department of Neurology at McGovern Medical School at UTHealth Houston and Memorial Hermann Hospital. Located in Houston, the Institute draws patients from around the world for specialized treatment of diseases of the brain and spine. It was the first center in Texas and one of only a few institutions in the country to fully integrate neurology, neurosurgery, neuroradiology, neuro-oncology, spine surgery, pain medicine and neurorehabilitation.

<span class="mw-page-title-main">Theodore H. Schwartz</span> American medical scientist

Theodore H. Schwartz is an American medical scientist, academic physician and neurosurgeon.

People with epilepsy may be classified into different syndromes based on specific clinical features. These features include the age at which seizures begin, the seizure types, and EEG findings, among others. Identifying an epilepsy syndrome is useful as it helps determine the underlying causes as well as deciding what anti-seizure medication should be tried. Epilepsy syndromes are more commonly diagnosed in infants and children. Some examples of epilepsy syndromes include benign rolandic epilepsy, childhood absence epilepsy and juvenile myoclonic epilepsy. Severe syndromes with diffuse brain dysfunction caused, at least partly, by some aspect of epilepsy, are also referred to as epileptic encephalopathies. These are associated with frequent seizures that are resistant to treatment and severe cognitive dysfunction, for instance Lennox-Gastaut syndrome and West syndrome.

<span class="mw-page-title-main">Charlotte's Web (cannabis)</span> Strain of medical marijuana

Charlotte's Web is a brand of high-cannabidiol (CBD), low-tetrahydrocannabinol (THC) products derived from industrial hemp and marketed as dietary supplements and cosmetics under federal law of the United States. It is produced by Charlotte's Web, Inc. in Colorado. Hemp-derived products do not induce the psychoactive "high" typically associated with recreational marijuana strains that are high in THC. Charlotte's Web hemp-derived products contain less than 0.3% THC.

References

  1. 1 2 3 4 Chalfont Centre Duncan, JS & G Faulkner. Seizure. 2003. Retrieved 13/04/18
  2. 1 2 Brain Damage Link to Epilepsy BBC News
  3. Public "ignorant" about epilepsy BBC News
  4. 1 2 Epilepsy Employment Stigma can be Overcome Archived 2016-10-19 at the Wayback Machine UCB News, May 2016
  5. Epilepsy Society Increase Valproate awareness ITV News, 26/09/17
  6. Epilepsy Spirit Myths Endure BBC News, May 2003
  7. Sander, JW; Barclay, J; Shorvon, SD (June 1993). "The neurological founding fathers of the National Society for Epilepsy and of the Chalfont Centre for Epilepsy". Journal of Neurology, Neurosurgery, and Psychiatry . 56 (6): 599–604. doi:10.1136/jnnp.56.6.599. PMC   489607 . PMID   8509771.
  8. 1 2 "The History of Epilepsy Society". Epilepsy Society. Archived from the original on 9 October 2011. Retrieved 7 August 2011.
  9. "Epilepsy Society calls on Gov to safeguard people with photosensitive epilepsy online | Epilepsy Society". 15 April 2019.
  10. "Hero Zach completes his 2.6 challenge | Epilepsy Society". 6 July 2020.
  11. "Law Commission recommends specific offence for malicious tweets sent to trigger seizures | Epilepsy Society". 21 July 2021.
  12. https://epilepsysociety.org.uk/sites/default/files/2021-02/Daily%20Express%2019%20February%202021.pdf
  13. "Trolls attack boy with epilepsy, 8, by sending him hundreds of flashing images". 29 May 2020.
  14. "Dean Russell supports the inclusion of Zach's Law into the Online Safety Bill during final stages". 18 January 2023.
  15. "Zach's Law". 28 October 2022.
  16. https://www.dewsburyreporter.co.uk/news/people/batley-and-spen-mp-kim-leadbeater-welcomes-publication-of-zachs-law-to-protect-people-with-epilepsy-3898085
  17. https://twitter.com/MrJohnNicolson/status/1471864413355491333
  18. "Youngster celebrates new law after campaign against trolls targeting epilepsy". independent.co.uk. 20 September 2023. Retrieved 22 September 2023.
  19. Hymas, Charles (17 February 2023). "Trolling of epilepsy sufferers with flashing images to be made illegal". The Telegraph.