Epilepsy Stigma

February 13, 2019

 

Epilepsy is a neurological disorder where abnormal electrical activity in the brain results in episodes of convulsion or unusual behavior. Although epilepsy is not a rare disorder, with one in twenty-six people developing it over the course of their lifetime, it remains a large mystery to the medical community and relatively unknown to the general public.This disorder has continued to evade being understood by health professionals and researchers in large part due to its complexity. Its causes are unknown, with predispositions ranging from genetic factors, complications from birth, diet, and environmental triggers. The age of onset and diagnosis is widespread, reaching from the youngest infants to the elderly. Though there are a variety of treatments available, including medication, implantation of devices, and surgical intervention, patients with a seemingly similar display of symptoms and underlying causes respond very differently to treatments.

 

The vast uncertainty surrounding this disorder is particularly terrifying to individuals with this diagnosis. For some, an epileptic episode can occur at any time, with no apparent trigger or aura (hint of an oncoming seizure). This first phase, which has been labelled as the aura phase, refers to the sensations or perceptions an individual experiences prior to the onset of a seizure. The fear of when, where, and how severe the next seizure will be is a compelling fear for a majority of patients whose seizures are not yet controlled. The period in which a seizure is occurring is referred to as ictus. The postictal state, or the third and final phase that a seizure usually undergoes, typically lasts between five to thirty minutes but can be much longer for more severe episodes. In this altered state of mind, which is often characterized by confusion, disorientation, dizziness, and exhaustion, vulnerability is a large concern.

 

Exacerbating these fears is the discrimination that patients with this disorder must endure. While epilepsy is no longer viewed as a demonic possession, as it was in the 18th and 19th centuries, many false myths and stigmas continue to prevail. A significant proportion of the general population believes that epilepsy is contagious and is reluctant to interact with patients with this disorder. Others incorrectly attribute the symptoms of epilepsy to a mental illness. There have been countless reports of employers firing their employees under the perception that they are unable to perform at the same level as non-epileptic colleagues. Wanting to steer clear of these stigmas of inferiority and the discrimination that results, patients may feel compelled to hide their diagnosis over fear of how others will react.

 

Although epilepsy is a complex disorder that continues to disrupt the lives of many patients, the future seems promising. The latest advancement in spreading awareness involves a six-month campaign in which Lattebusche, an Italian dairy company, will print guidelines that individuals should follow should they witness a seizure occur; the Italian League Against Epilepsy (LICE) and Italian Association Against Epilepsy (AICE) hope this initiative will be a source of inspiration for other nations. Furthermore, just seven months ago, the U.S. Food and Drug Administration approved Epidiolex, the first prescription pharmaceutical medication derived from cannabidiol (CBD) for medically refractory epilepsy in children. Researchers continue to explore new treatments, including the development of new medications and procedures that are less invasive.

 

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