Eskişehir, Türkiye
Tuesday 26 March 2024
“On to “the Daily Express” office about books.
I see an intolerable man who treats me and literature as if they were dirt.
I am so depressed by the squalor of this interview that I return home in a nerve storm.
To make it worse, I am sent out to represent “the Standard” at the Knights of the Round Table dinner.
There is no seat for me and I creep away in dismay and humiliation.
I never foresaw that writing for the Press would be actually so degrading.
What I dread is that I might get to like it:
The moment I cease to be unhappy about it will be the moment when my soul has finally been killed.”
(26 March 1930, Harold Nicolson)
Above: British politician / diarist Harold Nicolson (1886 – 1968)
Lack of tolerance, poor treatment, humiliation, degradation, dread, unhappiness.
Nicolson wanted dignity and felt that the desire for that dignity being denied was soul-crippling.
Today is Purple Day and it is the question of dignity that led to the formation of this event.
Purple Day is a global grassroots event that was formed with the intention to increase worldwide awareness of epilepsy, and to dispel common myths and fears of this neurological disorder.
Further intentions of this movement are to reduce the social stigma commonly endured by many individuals afflicted with the condition, to provide assurance and advocacy to those living with epilepsy, and to encourage individuals living with the condition to take action in their communities to achieve these aims.
The day occurs and is celebrated annually on 26 March.
The concept of PURPLE (People everywhere are Understanding the Reality for People Living with Epilepsy) Day was initiated by a 9-year-old Canadian named Cassidy Megan, motivated by her own struggle with epilepsy.
People across the globe are set to color-cordinate today in honor of Purple Day, the international day for epilepsy awareness.
Purple Day aims to dispel myths surrounding epilepsy, a condition of the brain that affects 50 million people worldwide.
Cassidy Megan founded the event in 2008 following her own battles with epilepsy after she was diagnosed at age 7.
The Anita Kaufmann Foundation and the Epilepsy Association of Nova Scotia joined forces in 2009 and helped launch Purple Day internationally.
Above: Cassidy Megan
It is estimated that over 2.2 million Americans live with epilepsy today.
Celebrities who were or have been affected by the condition include actor Danny Glover , former US President Theodore Roosevelt and rapper Lil Wayne.
Above: A still image of a generalized seizure
It has been hypothesized by scholars that Socrates (470 – 399 BC) had a mild case of temporal lobe epilepsy without secondary generalization, due to some of his enigmatic remarks and behaviors.
Scholars investigated the possibility of underlying epilepsy in Socrates by analyzing pathographic evidence in ancient literature from the viewpoint of the current understanding of seizure semiology.
Above: Bust of Socrates, University of Western Australia
Based on remarks by Plutarch (46 – 119), Julius Caesar (100 – 44 BC) is sometimes thought to have suffered from epilepsy.
Modern scholarship is sharply divided on the subject.
Some scholars believe that he was plagued by malaria, particularly during the Sullan proscriptions of the 80s BC.
Other scholars contend his epileptic seizures were due to a parasitic infection in the brain by a tapeworm.
Caesar had four documented episodes of what may have been complex partial seizures.
He may additionally have had absence seizures in his youth.
The earliest accounts of these seizures were made by the biographer Suetonius (69 – 122), who was born after Caesar died.
The claim of epilepsy is countered among some medical historians by a claim of hypoglycemia, which can cause epileptoid seizures.
Above: Bust of Julius Caesar
Joan of Arc (1412 – 1431) may have had a type of epilepsy that affects the part of the brain responsible for hearing, or idiopathic partial epilepsy with auditory features.
(“Idiopathic” means that the epilepsy likely has a genetic cause, and “partial” means that the epilepsy affects only one area of the brain).
Several aspects of Joan’s symptoms, which have been detailed in historical accounts, help support this diagnosis.
Above: Jeanne d’Arc (Joan of Arc)
In 1775, future US President James Madison (1751 – 1836) attended a militia drill and suddenly collapsed without warning.
Madison’s collapse at age 24 has been referred to as an “absence seizure” because the victim appears to momentarily be elsewhere.
These seizures, a form of epilepsy also known as “petit mal” (from the French word for “little illness”) usually are brief, often less than 15 seconds and barely noticeable, in contrast to other seizure disorders.
Above: James Madison
The evidence shows that Napoleon Bonaparte (1769 – 1821) had both psychogenic and epileptic attacks.
The psychogenic attacks were likely related to the tremendous stress in his life.
The epileptic seizures were the result of chronic uremia from a severe urethral stricture caused by gonorrhea that was transmitted from his wife, Empress Josephine (1796 – 1810).
Above: French Emperor Napoleon I
Edgar Allan Poe (1809 – 1849), one of the most celebrated of American storytellers, lived through and wrote descriptions of episodic unconsciousness, confusion and paranoia.
These symptoms have been attributed to alcohol or drug abuse but also could represent complex partial seizures, prolonged postictal states, or postictal psychosis.
Complex partial seizures were not well described in Poe’s time, which could explain a misdiagnosis.
Alternatively, he may have suffered from complex partial epilepsy that was complicated or caused by substance abuse.
Above: Edgar Allan Poe
English novelist Charles Dickens (1812 – 1870) is thought to have suffered from epilepsy as a child and possibly throughout his life.
Several of his characters – including Monks in Oliver Twist, Guster in Bleak House and Bradley Headstone in Our Mutual Friend – experience “fits” resembling epileptic seizures.
Modern doctors have observed that Dickens described “the falling sickness”, as it was then known, with incredible medical accuracy.
Above: Charles Dickens
When American social activist Harriet Tubman (1822 – 1913) was a teenager, she acquired a traumatic brain injury when a slave owner struck her in the head.
This resulted in her developing epileptic seizures and hypersomnia.
She did not let her disability keep her or those around her enslaved.
Tubman is a prominent figure and was not afraid to be a leader as an African American, a woman and a person with a disability.
Above: Harriet Tubman
A sickly child with debilitating asthma, Theodore Roosevelt (1858 – 1919) overcame his health problems by embracing a strenous lifestyle.
He integrated his exuberant personality and a vast range of interests and achievements into a “cowboy” persona defined by robust masculinity.
He was home-schooled and began a lifelong naturalist avocation.
Roosevelt’s youth was largely shaped by his poor health and debilitating asthma.
He repeatedly experienced sudden nighttime asthma attacks that caused the experience of being smothered to death, which terrified both Theodore and his parents.
Doctors had no cure.
Nevertheless, he was energetic and mischievously inquisitive.
His lifelong interest in zoology began at age seven.
Hiking with his family in the Alps in 1869, Roosevelt discovered the benefits of physical exertion to minimize his asthma and bolster his spirits.
Roosevelt began a heavy regimen of exercise.
After being manhandled by two older boys on a camping trip, he found a boxing coach to teach him to fight and strengthen his body.
Throughout his life, Roosevelt suffered from epilepsy and was prone to epileptic seizures, but that did not hold him from his convictions.
Upon the end of the Spanish-American War, he was elected Governor of New York in 1898.
Named as Vice President under President McKinley’s re-election in 1901, he assumed the Presidency at age 42 after McKinley was assassinated.
Above: Theodore Roosevelt
When US Chief Justice John Roberts experienced the second seizure of his life on 30 July 2007, he may have become, in medical terms, an epileptic.
Doctors classify anyone who has experienced two or more unexplained seizures as having epilepsy.
His seizure, as well as an earlier episode that occurred 14 years ago, were “benign idiopathic”, meaning that their cause is unknown.
The diagnosis of epilepsy, say experts, may not necessarily mean that Roberts will have to take anti-seizure medication, which can control the electrical activity of the brain, or have to be concerned that future events will impair his ability to function on the Supreme Court.
Above: John Roberts
World-famous singer Prince (1958 – 2016) was quoted speaking about his epilepsy:
“I’ve never spoken about this before, but I was born epileptic and I used to have seizures when I was young,” he told US talk-show host Tavis Smiley.
“And my mother and father didn’t know what to do or how to handle it, but they did the best they could with what little they had.”
Above: Prince Rogers Nelson
The Academy Award-winning actor Danny Glover struggled with epilepsy and seizures as a child.
Like many people with epilepsy, he outgrew the disorder.
Glover attributes part of his success to being able to recognize the warning signs of seizures after his first one at the age of 15.
He said:
“Eventually, I could recognize it happening.
Each time I got a bit stronger and the symptoms began to diminish to the point where I was ready to go on stage.”
Above: Danny Glover
Prior to his sophomore football season, Jason Snelling was diagnosed with epilepsy which caused him to take a medical redshirt during that season.
His rushing average is still the 5th best on the all-time rushing list at Virginia.
Off the field, Jason continues to very active in the Epilepsy Foundation both locally and nationally.
In 2013, he participated in a national epilepsy walk in Washington, DC and supports their biggest fundraiser of the year, Taste of Love, as well as participates in the Magnolia Run to benefit that worthy cause.
Above: Jason Snelling
American rapper Lil Wayne, real name Dwayne Michael Carter Jr, suffers from epilepsy and has been hospitalized a number of times in recent years as a result of seizures.
He stated that:
“This isn’t my first, second, third, fourth, fifth, sixth, seventh seizure.
I’ve had a bunch of seizures, y’all just never hear about them.”
Above: Lil Wayne
The condition is characterized by recurrent seizures.
It is one of the most common neurological disorders.
An onset of epilepsy can occur at any age, although more often it occurs in childhood or late in life.
Seizures can happen at any time, but in more than half of cases they can be controlled with medication.
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 (set out by the International League Against Epilepsy) 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 detectable 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.
The underlying mechanism of an epileptic seizure is excessive and abnormal neuronal activity in the cortex of the brain which can be observed in the electroencephalogram (EEG) of an individual.
The reason this occurs in most cases of epilepsy is unknown (cryptogenic).
Some cases occur as the result of brain injury, stroke, brain tumors, infections of the brain, or birth defects through a process known as epileptogenesis.
Known genetic mutations are directly linked to a small proportion of cases.
The diagnosis involves ruling out other conditions that might cause similar symptoms, such as fainting, and determining if another cause of seizures is present, such as alcohol withdrawl or electrolyte problems.
This may be partly done by imagining the brain and performing blood tests.
Epilepsy can often be confirmed with an EEG, but a normal test does not rule out the condition.
Epilepsy that occurs as a result of other issues may be preventable.
Seizures are controllable with medication in about 69% of cases.
Inexpensive anti-seizure medications are often available.
In those whose seizures do not respond to medication, surgery, neurostimulation or dietary changes may then be considered.
Not all cases of epilepsy are lifelong.
Many people improve to the point that treatment is no longer needed.
As of 2020, about 50 million people have epilepsy.
Nearly 80% of cases occur in the developing world.
In 2015, it resulted in 125,000 deaths, an increase from 112,000 in 1990.
Epilepsy is more common in older people.
In the developed world, onset of new cases occurs most frequently in babies and the elderly.
In the developing world, onset is more common at the extremes of age – in younger children and in older children and young adults due to differences in the frequency of the underlying causes.
About 5% – 10% of people will have an unprovoked seizure by the age of 80.
The chance of experiencing a second seizure within two years after the first is around 40%.
In many areas of the world, those with epilepsy either have restrictions placed on their ability to drive or are not permitted to drive until they are free of seizures for a specific length of time.
The word epilepsy is from Ancient Greek (ἐπιλαμβάνειν), ‘to seize, possess, or afflict‘.
The oldest medical records show that epilepsy has been affecting people at least since the beginning of recorded history.
Throughout ancient history, the disease was thought to be a spiritual condition.
The world’s oldest description of an epileptic seizure comes from a text in Akkadian (a language used in ancient Mesopotamia) and was written around 2000 BC.
The person described in the text was diagnosed as being under the influence of a moon god, and underwent an exorcism.
Epileptic seizures are listed in the Code of Hammurabi (1790 BC) as reason for which a purchased slave may be returned for a refund.
The Edwin Smith Papyrus (1700 BC) describes cases of individuals with epileptic convulsions.
The oldest known detailed record of the disease itself is in the Sakikku, a Babylonian cuneiform medical text from 1046 BC.
This text gives signs and symptoms, details treatment and likely outcomes, and describes many features of the different seizure types.
As the Babylonians had no biomedical understanding of the nature of disease, they attributed the seizures to possession by evil spirits and called for treating the condition through spiritual means.
Around 900 BC, Punarvasnu Atreya described epilepsy as loss of consciousness.
This definition was carried forward into the Ayurvedic text of Charaka Samhita (400 BC).
The ancient Greeks had contradictory views of the disease.
They thought of epilepsy as a form of spiritual possession, but also associated the condition with genius and the divine.
One of the names they gave to it was the sacred disease (Ancient Greek: ἠ ἱερὰ νόσος).
Epilepsy appears within Greek mythology:
It is associated with the Moon goddesses Selene and Artemis, who afflicted those who upset them.
Above: Bust of Selene
Above: Statue of Artemis
The Greeks thought that important figures such as Julius Caesar and Hercules had the disease.
Above: Hercules
The notable exception to this divine and spiritual view was that of the school of Hippocrates (460 – 370 BC).
In the 5th century BC, Hippocrates rejected the idea that the disease was caused by spirits.
In his landmark work On the Sacred Disease, he proposed that epilepsy was not divine in origin and instead was a medically treatable problem originating in the brain.
He accused those of attributing a sacred cause to the disease of spreading ignorance through a belief in superstitious magic.
Hippocrates proposed that heredity was important as a cause, described worse outcomes if the disease presents at an early age, and made note of the physical characteristics as well as the social shame associated with it.
Instead of referring to it as the sacred disease, he used the term great disease, giving rise to the modern term grand mal, used for tonic–clonic seizures.
Despite his work detailing the physical origins of the disease, his view was not accepted at the time.
Evil spirits continued to be blamed until at least the 17th century.
In Ancient Rome people did not eat or drink with the same pottery as that used by someone who was affected.
People of the time would spit on their chest believing that this would keep the problem from affecting them.
According to Apuleius (124 – 170) and other ancient physicians, to detect epilepsy, it was common to light a piece of gagates (a kind of low grade coal), whose smoke would trigger the seizure.
Occasionally a spinning potter’s wheel was used, perhaps a reference to photosensitive epilepsy.
Above: Apuleuis
In most cultures, persons with epilepsy have been stigmatized, shunned, or even imprisoned.
As late as the second half of the 20th century, in Tanzania and other parts of Africa epilepsy was associated with possession by evil spirits, witchcraft, or poisoning and was believed by many to be contagious.
Above: Flag of Tanzania
In the Salpêtrière (a charitable hospital in Paris), the birthplace of modern neurology, Jean Martin Charcot (1825 – 1893) found people with epilepsy side by side with the mentally ill, those with chronic syphilis and the criminally insane.
In Ancient Rome, epilepsy was known as the morbus comitialis (or ‘disease of the assembly hall‘) and was seen as a curse from the gods.
In northern Italy, epilepsy was traditionally known as Saint Valentine’s malady.
Above: Statue symbolizing the founding of Rome
In at least the 1840s in the United States, epilepsy was known as the falling sickness or the falling fits, and was considered a form of medical insanity.
Above: Flag of the United States of America
Around the same time period, epilepsy was known in France as the haut-mal (‘high evil‘), mal-de terre (‘earthen sickness‘), mal de Saint Jean (‘Saint John’s sickness‘), mal des enfans (‘child sickness‘) and mal-caduc (‘falling sickness‘).
Patients of epilepsy in France were also known as tombeurs (‘people who fall‘), due to the seizures and loss of consciousness in an epileptic episode.
Above: Flag of France
In the mid-19th century, the first effective anti-seizure medication, bromide, was introduced.
The first modern treatment, phenobarbital, was developed in 1912, with phenytoin coming into use in 1938.
Epilepsy can have adverse effects on social and psychological well-being.
These effects may include social isolation, stigmatization or disability.
They may result in lower educational achievement and worse employment outcomes.
Learning disabilities are common in those with the condition, and especially among children with epilepsy.
The stigma of epilepsy can also affect the families of those with the disorder.
Certain disorders occur more often in people with epilepsy, depending partly on the epilepsy syndrome present.
These include depression, anxiety, obsessive-compulsive disorder (OCD) and migraines.
Attention deficit hyperactivity disorder (ADHD) affects three to five times more children with epilepsy than children without the condition.
ADHD and epilepsy have significant consequences on a child’s behavioral, learning and social development.
Epilepsy is also more common in children with autism.
Approximately, one-in-three people with epilepsy have a lifetime history of a psychiatric disorder.
There are believed to be multiple causes for this including pathophysiological changes related to the epilepsy itself as well as adverse experiences related to living with epilepsy (e.g., stigma, discrimination).
In addition, it is thought that the relationship between epilepsy and psychiatric disorders is not unilateral but rather bi-directional.
For example, patients with depression have an increased risk for developing new onset epilepsy.
The presence of comorbid depression or anxiety in patients with epilepsy is associated with a poorer quality of life, increased mortality, increased healthcare use and a worse response to treatment (including surgical).
Anxiety disorders and depression may explain more variability in quality of life than seizure type or frequency.
There is evidence that both depression and anxiety disorders are underdiagnosed and undertreated in patients with epilepsy.
Social stigma is commonly experienced, around the world, by those with epilepsy.
It can affect people economically, socially and culturally.
In India and China, epilepsy may be used as justification to deny marriage.
Above: Indian wedding
People in some areas still believe those with epilepsy to be cursed.
In parts of Africa, such as Tanzania and Uganda, epilepsy is claimed to be associated with possession by evil spirits, witchcraft, or poisoning and is incorrectly believed by many to be contagious.
Above: Flag of Uganda
Before 1971 in the United Kingdom, epilepsy was considered grounds for the annulment of marriage.
The stigma may result in some people with epilepsy denying that they have ever had seizures.
Flag of the United Kingdom of Great Britain and Northern Ireland
Seizures result in direct economic costs of about $1 billion in the United States.
Epilepsy resulted in economic costs in Europe of around €15.5 billion in 2004.
Above: Flag of the European Union
In India epilepsy is estimated to result in costs of US$1.7 billion or 0.5% of the GDP.
Above: Flag of India
It is the cause of about 1% of emergency department visits (2% for emergency departments for children) in the United States.
Those with epilepsy are at about twice the risk of being involved in a motor vehicular collision and thus in many areas of the world are not allowed to drive or only able to drive if certain conditions are met.
Diagnostic delay has been suggested to be a cause of some potentially avoidable motor vehicle collisions since at least one study showed that most motor vehicle accidents occurred in those with undiagnosed non-motor seizures as opposed to those with motor seizures at epilepsy onset.
In some places physicians are required by law to report if a person has had a seizure to the licensing body while in others the requirement is only that they encourage the person in question to report it himself.
Countries that require physician reporting include Sweden, Austria, Denmark and Spain.
Countries that require the individual to report include the UK and New Zealand.
Physicians may report if they believe the individual has not already.
In Canada, the United States and Australia the requirements around reporting vary by province or state.
If seizures are well controlled most feel allowing driving is reasonable.
The amount of time a person must be free from seizures before he can drive varies by country.
Many countries require one to three years without seizures.
In the United States the time needed without a seizure is determined by each state and is between three months and one year.
Those with epilepsy or seizures are typically denied a pilot license.
In Canada if an individual has had no more than one seizure, they may be considered after five years for a limited license if all other testing is normal.
Those with febrile seizures and drug related seizures may also be considered.
Above: Flag of Canada
In the United States, the Federal Aviation Administration (FAA) does not allow those with epilepsy to get a commercial pilot license.
Rarely, exceptions can be made for persons who have had an isolated seizure or febrile seizures and have remained free of seizures into adulthood without medication.
In the United Kingdom, a full national private pilot license requires the same standards as a professional driver’s license.
This requires a period of 10 years without seizures while off medications.
Those who do not meet this requirement may acquire a restricted license if free from seizures for five years.
There are organizations that provide support for people and families affected by epilepsy.
The Out of the Shadows campaign, a joint effort by the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), provides help internationally.
In the United States, the Epilepsy Foundation is a national organization that works to increase the acceptance of those with the disorder, their ability to function in society and to promote research for a cure.
The Epilepsy Foundation, some hospitals and individuals also run support groups in the United States.
In Australia, the Epilepsy Foundation provides support, delivers education and training and funds research for people living with epilepsy.
Above: Flag of Australia
International Epilepsy Day (World Epilepsy Day) began in 2015 and occurs on the second Monday in February.
Purple Day, a different worldwide epilepsy awareness day for epilepsy, was initiated by a 9-year-old Canadian named Cassidy Megan in 2008, and is every year on 26 March.
The first Purple Day event was held on 26 March 2008.
It is now known as the Purple Day for Epilepsy campaign.
The Epilepsy Association of Nova Scotia joined Cassidy and helped to spread awareness of Cassidy’s initiative.
Canadian Epilepsy Alliance, 1 March 2010
After two weeks cheering for gold, silver and bronze, 11-year-old Cassidy Megan of Halifax, Nova Scotia is going for purple and inspiring supporters around the world to do the same.
March is Epilepsy Awareness Month and Cassidy, who lives with epilepsy, created Purple Day for Epilepsy (Purple Day) to increase awareness and dispel myths about one of Canada’s most common neurological disorders.
“Purple Day helps Canadians understand that not all seizures are the same, and that people with epilepsy are ordinary people just like everybody else,” said Cassidy Megan, the founder of Purple Day.
“Purple Day also reminds people living with epilepsy that they aren’t alone.
That’s why we wear purple, the international colour for epilepsy.“
Epilepsy affects 300,000 people in Canada and 50 million people worldwide, which is more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.
Despite its prevalence, epilepsy isn’t well-understood.
People with epilepsy continue to face social stigma and discrimination.
“When people know more about different kinds of seizures, and how to help someone having a seizure, they immediately become more receptive to seeing the person with epilepsy as an ordinary individual,” said Deirdre Floyd, president of the Epilepsy Association of Nova Scotia, who helped Cassidy bring Purple Day to life.
“Purple Day reminds Canadians that people living with epilepsy need understanding and acceptance, and deserve comprehensive care and access to innovative treatment options to effectively manage their disorder.“
Purple Day increases awareness, reduces stigma and empowers individuals living with epilepsy to take action in their communities.
Canadians are encouraged to learn more about epilepsy throughout the month of March, culminating with Purple Day on 26 March.
Fifteen countries will be participating around the world, supporting epilepsy by wearing purple or by getting involved in a Purple Day awareness or fundraising event.
“Providing the public with accurate information about epilepsy is the key to better acceptance of people with the disorder,” said Catherine Sauerwein, a neuropsychologist and president of the Canadian Epilepsy Alliance.
“Demystifying epilepsy is a major step towards improving the quality of life of individuals with epilepsy.“
Member groups of the Canadian Epilepsy Alliance are rolling out Purple Day activities across the country.
In 2009, the international launch of Purple Day led to the involvement of numerous organizations, schools, businesses, politicians and celebrities worldwide.
In 2010, Ambassadors of Purple organized grassroots events around the globe, with volunteer Ambassadors working in countries, such as the United States, Mexico, the Netherlands, Australia, Uganda and Kuwait.
Epilepsy is a group of disorders of the central nervous system, specifically the brain.
Epilepsy is characterized by recurrent unprovoked seizures and can occur at any age.
A seizure occurs when the normal electrical balance in the brain is lost.
The brain’s nerve cells misfire, either firing when they shouldn’t or not firing when they should.
The type of seizure depends on how many cells fire and which area of the brain is involved.
A person that has a seizure may experience an alteration in behaviour, consciousness, movement, perception and/or sensation.
Epilepsy is not contagious.
It is rarely fatal.
Purple Day for Epilepsy (Purple Day) is held each year on 26 March and is dedicated to raising awareness about epilepsy by reducing stigma and empowering individuals living with epilepsy to take action in their communities.
It was named after the internationally recognized colour for epilepsy, lavender.
In 2009, the New York-based Anita Kaufmann Foundation and Epilepsy Association of Nova Scotia joined to launch Purple Day internationally and increase the involvement of organizations, schools, businesses, politicians and celebrities.
On 26 March 2009, over 100,000 students, 95 workplaces and 116 politicians participated in Purple Day.
In March 2009, the official USA Purple Day Party launch was organized by the Anita Kaufmann Foundation. Canadian Paul Shaffer of the Late Show with David Letterman attended the official launch at Dylan’s Candy Bar in New York City.
Above: Paul Shafer
In March 2012, Purple Day received Royal Assent and became a legal day for epilepsy awareness in Canada.
Above: Flag of the Commonwealth of Nations (formerly the British Commonwealth)
Canadian Epilesy Alliance, 29 January 2012
An Act representing a day to increase public awareness about epilepsy, Bill C-278, has received Royal Assent and is now a legally recognized day for epilepsy awareness in Canada.
The Bill establishes 26 March as Purple Day, a day each year when Canadians wear purple to promote a greater awareness of epilepsy and support the 300,000 Canadians living with the disorder.
Inspired by Cassidy Megan, Purple Day dispels the myths about epilepsy and helps people living with the disorder understand that they are not alone.
Hon. Geoff Regan, M.P. for Halifax West, wrote the Private Member’s, Bill C-278 (The Purple Day Act), in late 2008.
Since then, Bill C-278 has progressed through the necessary steps in the House of Commons and Senate, to become law.
“The swift passing of this Bill is a meaningful show of support for the 300,000 Canadians living with epilepsy and their families,” said Regan.
“I am so grateful that Mr. Regan and Parliament believed in me and Purple Day, and showed the 300,000 Canadians living with epilepsy that they care and that we are not alone,” said Cassidy Megan, Purple Day founder.
“I also want to thank the Epilepsy Association of Nova Scotia and the other member agencies of the Canadian Epilepsy Alliance for helping me make my dream come true.“
Above: Parliament Hill, Ottawa, Ontario, Canada
According to a survey titled The Impact of Epilepsy on Canadians, conducted in late 2011 by Leger Marketing, many Canadians living with epilepsy experience social isolation, work barriers and relationship issues.
Over half of the survey respondents (56%) say that restricted independence due to epilepsy is their number one challenge.
Stigma, discrimination and a lack of awareness about epilepsy is cited by 38% as the number two challenge, along with the impact of the disorder on their social life.
The third biggest challenge facing Canadians with epilepsy is maintaining employment, with half saying their job choices are restricted, and just under 40% unable to get a job if they disclose their condition.
“On behalf of the Canadian Epilepsy Alliance, I would like to thank Mr. Regan for writing the Private Member’s Bill and Parliament for passing this legislation,” said Deirdre Floyd, Chair of the Purple Day Campaign and Vice-President of the Canadian Epilepsy Alliance.
“To my knowledge, this is the only legislation of its kind in Canada.
I strongly believe that Purple Day will help to further our national mandate to support public awareness for epilepsy and research for those living with this serious neurological condition.“
In December 2015, electronics retailer Dick Smith arranged a major corporate partnership with Epilepsy Action Australia to support Purple Day in Australia with a A$50,000 cash sponsorship, prizes and exclusive distribution of Purple Day merchandise.
A week prior to Purple Day celebrations in 2016, Dick Smith was placed in receivership.
(Dick Smith Electronics Holdings Limited (1968 – 2016) was an Australian chain of retail stores that sold consumer electronics goods, hobbyist electronic components, and electronic project kits.
The chain expanded successfully into New Zealand and unsuccessfully into several other countries.
The company was founded in Sydney in 1968 by Dick Smith and owned by him and his wife until they sold 60% to Woolworths in 1980, and the remaining 40% two years later.
In 2012, Dick Smith had 263 stores around Australia.
It also had 62 stores around New Zealand, including 20 in Auckland.
The company closed all of its stores in 2016, four years after its acquisition by Anchorage Capital Partners, though the Dick Smith brand name continues as an online brand operated by Kogan.com.)
Later, the Retail Food Group provided a $50,000 donation to match Dick Smith’s previously promised sponsorship.
(Retail Food Group (Australia) Limited, often abbreviated as RFG, is an ASX-listed company and Australian franchisor based in Robina, Queensland.
It owns numerous companies including:
- Gloria Jean’s Coffee
- Brumby’s Bakeries
- Donut King
- Michel’s Patisserie
- Di Bella Coffee
- The Coffee Guy
- Café 2U
- Pizza Capers
- Crust Pizza )
The Anita Kaufmann Foundation owns the US trademark “Purple Day“, (Reg No. 4,055,0330, dated 15 November 2011).
The Epilepsy Association of the Maritimes own the Canadian trademark “Purple Day“.
Cassidy Megan, founder of Purple Day, is sole copywrite owner.
Supporters are encouraged to wear a purple-coloured item of clothing.
Purple is the international color for epilepsy.
Purple symbolizes solitude.
As aforementioned, the goal of Purple Day is to increase general public awareness, to reduce the social stigma endured by many individuals with the condition, and to empower individuals living with epilepsy to take action in their communities.
Purple Day is celebrated in Australia to fund various epilepsy support organisations including Epilepsy Australia, Epilepsy Queensland, and the Epilepsy Foundation.
In 2017, a Guinness World Record was reached during Purple Day by the Anita Kaufmann Foundation for the achievement of the largest ever epilepsy training session.
Amelia Heathman, The Standard, 26 March 2018
During the 2018 edition of Purple Day, the Epilepsy Care Alliance called on the technology sector to push further innovations for the treatment for epilepsy.
The Epilepsy Care Alliance, dedicated to improving the treatment and quality of life of epilepsy suffers is calling on hospitals to consider new technology investments that can improve patient treatment and reduce NHS (National Health Service) cost pressures.
The Epilepsy Care Alliance, comprised of Poole Hospital NHS Foundation Trust, the University of Kent, System C & Graphnet Care Alliance and Shearwater Systems, says that tech investments into epilepsy treatment could reduce pressure on the NHS by as much as £250 million a year.
Today (26 March) marks Purple Day, an international day of awareness for epilepsy, a neurological condition that leads to the tendency to have recurrent seizures.
Up to one in 100 people in the UK are believed to suffer from the condition, causing a total of 1.3 million days in hospital a year.
It’s a difficult condition to manage as existing medication only works for up to 70% of sufferers.
The Epilepsy Care Alliance has been running a programme, named My Care-Centric Epilepsy, exploring how technology can equip people with the ability to self-manage their condition.
Using Microsoft’s cloud platform Azure, the programme provides patients with a wearable tech band, which records health data to help clinicians build a record of a patient’s condition and seizure patterns.
This has the potential to learn to classify seizures, to alert clinicians in real-time so they can consult patients remotely, as well as provide essential lifestyle recommendations and drug prescriptions.
Dr Jon Shaw, director of clinical strategy at System C & Graphnet Care Alliance:
“What’s really exciting about this is that it’s a ‘first of type’ project that combines smart wearables, patient-facing applications, and enterprise communication technology, which gets messages out to the care team in real time.
Putting data into secure Azure environments gives us huge scale and ability to leverage machine learning and artificial intelligence capabilities as services and ultimately to improve patient outcomes.”
The programme has been running since 2016 and has collected such a vast amount of data that the consortium has been able to use this to gain vital insights that could advance epilepsy treatments.
For instance, they have been able to confirm relationships between lifestyle factors such as poor sleep and seizures to enable more accurate seizure prediction.
Dr Rupert Page, chief clinical information offer and consultant neurologist at Poole Hospital, said: “This approach has the potential to revolutionise the management of epilepsy by optimising the use of currently available treatments.
The powerful insights gained from the deeper awareness of the myriad of lifestyle and other factors which affect seizure frequency may open up entirely new areas of research or treatment.”
Above: Poole Hospital, Dorset, England
The funding for the My Care-Centric Epilepsy programme was made available by Innovate UK, the UK’s innovation agency.
Suzy Foster, Director of Health at Microsoft UK, said:
“As hospital trusts across the UK continue to face growing pressures, it’s more important than ever to invest in the right tools that focus on the patient as a person rather than the condition, delivering the most effective care and the best outcomes for patients and their families.”
Purple Day was celebrated at Walt Disney World in Orlando, for the third year in a row in 2020.
About 1,000 people attended.
It included a morning with Minnie and Mickey.
It had expo and information sessions in the afternoon.
Some topics were:
- Seizure Freedom and the Family
- Still Having Seizures Despite Medication
- CBD products: FDA approved vs. non FDA approved
- Seizure clusters, rescue meds, and therapy options
- The Early Years, Navigating Change, and Becoming Adults.
The day ended with a visit to Epcot where Spaceship Earth turned purple in support of epilepsy awareness.
Above: Walt Disney World, Orlando, Florida, 26 March 2020
Epilepsy appears in at least 63 works of fiction including:
- Fyodor Dostoevsky’s The Idiot
- Robert Skead’s Mighty Mike Bounces Back
- Don Trembath’s Lefty Carmichael Has a Fit
- Rona Jaffe’s Class Reunion
- Michael Crichton’s The Andromeda Strain
- Agatha Christie’s The ABC Murders
- William Golding’s Lord of the Flies
Today is Purple Day.
No one wants to be epileptic.
No one deserves to lose their dignity as a consequence of having this disease.
Purple has also been associated with power and royalty, piety, faith, penance and theology, vanity, extravagance and individualism, the artificial, materialism and beauty, ambıguity and ambivalence, and mourning.
I know my blogs may be seen as purple prose and that my opinions may be of little value to those born to the purple.
Is my desire for a purple patch in my life a symptom of purple haze?
Am I merely sporting purple or are my words as fitting as a purple squirrel?
Today let purple reign as a symbol of tolerance and compassion.
I never meant to cause you any sorrow
I never meant to cause you any pain
I only wanted to one time to see you laughing
I only wanted to see you
Laughing in the purple rain
Purple rain, purple rain
Purple rain, purple rain
Purple rain, purple rain
I only wanted to see you
Bathing in the purple rain
I never wanted to be your weekend lover
I only wanted to be some kind of friend
Baby, I could never steal you from another
It’s such a shame our friendship had to end
Purple rain, purple rain
Purple rain, purple rain
Purple rain, purple rain
I only wanted to see you
Underneath the purple rain
Honey, I know, I know
I know times are changing
It’s time we all reach out
For something new, that means you too
You say you want a leader
But you can’t seem to make up your mind
I think you better close it
And let me guide you to the purple rain
Purple rain, purple rain
Purple rain, purple rain
If you know what I’m singing about up here
C’mon, raise your hand
Purple rain, purple rain
I only want to see you
Only want to see you
In the purple rain
Sources
- Wikipedia
- Flora Carr, “People are wearing purple“, Time, 26 March 2018
- The Canadian Epilepsy Alliance
- The Epilepsy Agency of the Big Bend
- Amelia Heathman, “Purple Day“, The Standard, 26 March 2018
- www.newswire.ca
- Prince, “Purple Rain“