Purple Day

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Epilepsy Warrior Brooch May 2018 Purple Day.jpg

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. [1] Further intentions of this movement are to reduce the social stigmas 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 annually on March 26.

Contents

Formation and history

The concept of Purple Day was initiated by a nine-year-old Canadian named Cassidy Megan, and was motivated by her own struggle with epilepsy. [2] The first Purple Day event was held on March 26, 2008, and 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. [3]

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 March 26, 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.[ citation needed ]

In March 2012, Purple Day received the Royal Assent and became a legal day for epilepsy awareness in Canada. [4]

In December 2015, electronics retailer Dick Smith had arranged a major corporate partnership with Epilepsy Action Australia to support Purple Day in Australia with a $50,000 cash sponsorship, prizes and exclusive distribution of Purple Day merchandise. [5] [6] A week prior to Purple Day celebrations in 2016, Dick Smith was placed in receivership. [7] Later, the Retail Food Group provided a $50,000 donation to match Dick Smith's previously promised sponsorship. [8] [9]

The Anita Kaufmann Foundation owns the US trademark "Purple Day", Reg No. 4,055,0330, dated November 15, 2011. The Epilepsy Association of the Maritimes own the Canadian trademark "Purple Day" Cassidy Megan, founder of Purple Day is sole copywrite owner.[ citation needed ]

Description

A purple brooch bearing an inscription pertaining to epilepsy Epilepsy Warrior Brooch May 2018 Purple Day.jpg
A purple brooch bearing an inscription pertaining to epilepsy

Purple Day is held annually on March 26. Supporters are encouraged to wear a purple-coloured item of clothing. Purple is the international color for epilepsy and is also a color that symbolizes solitude.[ citation needed ]

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. [10]

Purple Day is celebrated in Australia to fund various epilepsy support organisations including Epilepsy Australia, Epilepsy Queensland, and Epilepsy Foundation.[ citation needed ]

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. [11]

Purple Day was celebrated at Walt Disney World in Orlando, Florida, for the third year in a row on March 1, 2020. About 1,000 people attended. It included a morning with Minnie and Mickey and 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.  There was also a $250 prize.[ citation needed ]

Guinness World Record

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. [12]

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 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.

Anticonvulsants are a diverse group of pharmacological agents used in the treatment of epileptic seizures. Anticonvulsants are also increasingly being used in the treatment of bipolar disorder and borderline personality disorder, since many seem to act as mood stabilizers, and for the treatment of neuropathic pain. Anticonvulsants suppress the excessive rapid firing of neurons during seizures. Anticonvulsants also prevent the spread of the seizure within the brain.

<span class="mw-page-title-main">Topiramate</span> Medication used to treat epilepsy and migraine

Topiramate, sold under the brand name Topamax among others, is a medication used to treat epilepsy and prevent migraines. It has also been used in alcohol dependence and essential tremor. For epilepsy this includes treatment for generalized or focal seizures. It is taken orally.

<span class="mw-page-title-main">Lamotrigine</span> Medication used for bipolar disorder, epilepsy, & many seizure disorders

Lamotrigine, sold under the brand name Lamictal among others, is a medication used to treat epilepsy and stabilize mood in bipolar disorder. For epilepsy, this includes focal seizures, tonic-clonic seizures, and seizures in Lennox-Gastaut syndrome. In bipolar disorder, lamotrigine has not been shown to reliably treat acute depression for all groups except in the severely depressed; but for patients with bipolar disorder who are not currently symptomatic, it appears to reduce the risk of future episodes of depression.

Absence seizures are one of several kinds of generalized seizures. In the past, absence epilepsy was referred to as "pyknolepsy," a term derived from the Greek word "pyknos," signifying "extremely frequent" or "grouped". These seizures are sometimes referred to as petit mal seizures ; however, usage of this terminology is no longer recommended. Absence seizures are characterized by a brief loss and return of consciousness, generally not followed by a period of lethargy. Absence seizures are most common in children. They affect both sides of the brain.

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">Cannabidiol</span> Phytocannabinoid discovered in 1940

Cannabidiol (CBD) is a phytocannabinoid discovered in 1940. It is one of 113 identified cannabinoids in cannabis plants, along with tetrahydrocannabinol (THC), and accounts for up to 40% of the plant's extract. As of 2022, clinical research on CBD included studies related to the treatment of anxiety, addiction, psychosis, movement disorders, and pain, but there is insufficient high-quality evidence that cannabidiol is effective for these conditions. CBD is also sold as a herbal dietary supplement promoted with unproven claims of particular therapeutic effects.

<span class="mw-page-title-main">Clobazam</span> Benzodiazepine class medication

Clobazam, sold under the brand names Frisium, Onfi and others, is a benzodiazepine class medication that was patented in 1968. Clobazam was first synthesized in 1966 and first published in 1969. Clobazam was originally marketed as an anxioselective anxiolytic since 1970, and an anticonvulsant since 1984. The primary drug-development goal was to provide greater anxiolytic, anti-obsessive efficacy with fewer benzodiazepine-related side effects.

<span class="mw-page-title-main">Stiripentol</span> Anticonvulsant medication

Stiripentol, sold under the brand name Diacomit, is an anticonvulsant medication used for the treatment of Dravet syndrome - a serious genetic brain disorder.

<span class="mw-page-title-main">Sturge–Weber syndrome</span> Medical condition

Sturge–Weber syndrome, sometimes referred to as encephalotrigeminal angiomatosis, is a rare congenital neurological and skin disorder. It is one of the phakomatoses and is often associated with port-wine stains of the face, glaucoma, seizures, intellectual disability, and ipsilateral leptomeningeal angioma. Sturge–Weber syndrome can be classified into three different types. Type 1 includes facial and leptomeningeal angiomas as well as the possibility of glaucoma or choroidal lesions. Normally, only one side of the brain is affected. This type is the most common. Type 2 involvement includes a facial angioma with a possibility of glaucoma developing. There is no evidence of brain involvement. Symptoms can show at any time beyond the initial diagnosis of the facial angioma. The symptoms can include glaucoma, cerebral blood flow abnormalities and headaches. More research is needed on this type of Sturge–Weber syndrome. Type 3 has leptomeningeal angioma involvement exclusively. The facial angioma is absent and glaucoma rarely occurs. This type is only diagnosed via brain scan.

Focal seizures are seizures which affect initially only one hemisphere of the brain. The brain is divided into two hemispheres, each consisting of four lobes – the frontal, temporal, parietal and occipital lobes. A focal seizure is generated in and affects just one part of the brain – a whole hemisphere or part of a lobe. Symptoms will vary according to where the seizure occurs. When seizures occur in the frontal lobe the patient may experience a wave-like sensation in the head. When seizures occur in the temporal lobe, a feeling of déjà vu may be experienced. When seizures are localized to the parietal lobe, a numbness or tingling may occur. With seizures occurring in the occipital lobe, visual disturbances or hallucinations have been reported.

Ethotoin is an anticonvulsant drug used in the treatment of epilepsy. It is a hydantoin, similar to phenytoin. It is not available in the United States.

Dravet syndrome (DS), previously known as severe myoclonic epilepsy of infancy (SMEI), is an autosomal dominant genetic disorder which causes a catastrophic form of epilepsy, with prolonged seizures that are often triggered by hot temperatures or fever. It is very difficult to treat with anticonvulsant medications. It often begins before one year of age, with six months being the age that seizures, char­ac­ter­ized by prolonged convulsions and triggered by fever, usually begin.

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."

Progressive Myoclonic Epilepsies (PME) are a rare group of inherited neurodegenerative diseases characterized by myoclonus, resistance to treatment, and neurological deterioration. The cause of PME depends largely on the type of PME. Most PMEs are caused by autosomal dominant or recessive and mitochondrial mutations. The location of the mutation also affects the inheritance and treatment of PME. Diagnosing PME is difficult due to their genetic heterogeneity and the lack of a genetic mutation identified in some patients. The prognosis depends largely on the worsening symptoms and failure to respond to treatment. There is no current cure for PME and treatment focuses on managing myoclonus and seizures through antiepileptic medication (AED).

<span class="mw-page-title-main">Lacosamide</span> Anticonvulsant and analgesic medication

Lacosamide, sold under the brand name Vimpat among others, is a medication used for the treatment of partial-onset seizures and primary generalized tonic-clonic seizures. It is used by mouth or intravenously.

<span class="mw-page-title-main">Prostate Cancer Foundation</span> American non-profit organization

The Prostate Cancer Foundation (PCF), headquartered in Santa Monica, California, funds research into the prevention and cure of prostate cancer.

<span class="mw-page-title-main">Perampanel</span> Anti-epileptic medication

Perampanel, sold under the brand name Fycompa, is an anti-epileptic medication developed by Eisai Co. that is used in addition to other drugs to treat partial seizures and generalized tonic-clonic seizures for people older than twelve years. It was first approved in 2012, and as of 2016, its optimal role in the treatment of epilepsy relative to other drugs was not clear. It was the first antiepileptic drug in the class of selective non-competitive antagonist of AMPA receptors.

Epilepsy-intellectual disability in females also known as PCDH19 gene-related epilepsy or epileptic encephalopathy, early infantile, 9 (EIEE9), is a rare type of epilepsy that affects predominately females and is characterized by clusters of brief seizures, which start in infancy or early childhood, and is occasionally accompanied by varying degrees of cognitive impairment. The striking pattern of onset seizures at a young age, genetic testing and laboratory results, potential developmental delays or developmental regression and associated disorders, eases diagnosis.

References

  1. "Purple day - 26 March 2022 | Epilepsy Society". www.epilepsysociety.org.uk. 15 March 2020.
  2. Carr, Flora (March 26, 2018). "People Are Wearing Purple Today for Epilepsy Awareness Day. Here's What That Is". Time.com. Retrieved April 18, 2018.
  3. "Gold, silver, bronze...and now purple! Another inspiring Canadian kicks off Epilepsy Awarenss Month". www.newswire.ca. March 1, 2010. Retrieved July 4, 2017.
  4. Canning, Nic (June 29, 2012). "Purple Day now legally recognized in Canada". Newswire.ca. Retrieved April 18, 2018.
  5. "Dick Smith collapse leaves epilepsy charity high and dry". ABC News. January 7, 2016. Retrieved July 2, 2017.
  6. Low, Catie (January 8, 2016). "Collapse leaves charity in a bind". The Sydney Morning Herald . p. 3.
  7. "Dick Smith enters receivership due to bad sales". ABC News. January 5, 2016. Retrieved July 2, 2017.
  8. "Charity in limbo gets help". The Age . Melbourne. January 19, 2016. p. 25.
  9. "Sweet spot for Epilepsy Action Australia". St Marys Star. March 17, 2016.
  10. "Three Cheers for Purple!". Canada Newswire. March 23, 2011.
  11. Heathman, Amelia (March 26, 2018). "Purple Day: Epilepsy alliance urge tech investments to improve patient care". Standard.co.uk. Retrieved April 18, 2018.
  12. "Largest epilepsy training session". Guinness World Records. Retrieved July 2, 2017.

Cited works and further reading