Written by: Matthew Supa
Edited by: Noordeep Kaur
When Cameron Boyce experienced his first seizure at the age of 16, perhaps nobody was more surprised than his parents. Their son was, otherwise, completely healthy; when Cameron seemed to suddenly return to being “‘completely fine and normal’” in the ambulance on the way to the hospital, Victor Boyce–Cameron’s dad–was more than a little confused as to what his son had just experienced (Hoshaw, 2023). However, it was only after Cameron had a second seizure, more than a year after his first, that he would be diagnosed with epilepsy–the significance of which was, for the most part, downplayed by his doctors (Hoshaw, 2023). As Victor explains himself, “‘A doctor handed me a pamphlet, like something you’d pick up on a bus. Very general information’” (Hoshaw, 2023). It was simply, in their view, something that Cameron would be able to manage and live with.
Within the three years following his first seizure, Cameron had experienced several more. Based on all that his parents had heard about the condition, he seemed to be managing, though, continuing with his work–and, seemingly, having relatively few seizures in that time in comparison to others the family had known who were facing epilepsy. And then, on July 6, 2019, Cameron Boyce – a son, brother, and renowned actor whose work made an impact on the lives of so many across the world – tragically passed away, his life taken by the epilepsy that even the doctors around him largely dismissed (Stump, 2019). When Cameron’s family received the autopsy results, the official cause of death shocked them: Sudden Unexplained Death in Epilepsy, also known as SUDEP (Hoshaw, 2023). In the wake of Cameron’s tragic passing, the question remains: what if Cameron and his family–as well as anyone else living with epilepsy and their loved ones–had been provided with the resources necessary to better understand and manage the condition?
In any attempt to better understand epilepsy and how it should be faced, it is crucial to gain some perspective about how it functions in the brain on a fundamental level. And, perhaps even more importantly, the question must be answered: just what is epilepsy? As defined by the National Institute of Neurological Disorders and Stroke, epilepsy is a chronic disorder of the brain “in which groups of nerve cells, or neurons, in the brain sometimes send the wrong signals and cause seizures” (“Epilepsy and Seizures,” 2023). Essentially, when neurons are acting irregularly, an individual can have a seizure; when the seizures are experienced recurrently, on a chronic level, that individual might then be diagnosed with epilepsy. “During a seizure,” the institute elaborates, “many neurons send signals at the same time, much faster than normal. This surge of excessive electrical activity may cause involuntary movements, sensations, emotions, and/or behaviors” (“Epilepsy and Seizures,” 2023). When someone experiences at least two seizures, according to the Centers for Disease Control, they can–in most cases–be diagnosed with epilepsy (“Frequently Asked Questions About Epilepsy,” 2022).
Epilepsy may look different for everyone. Some may experience less severe symptoms such as staring spells, while other seizures may cause “a person to fall, shake, and lose awareness of what’s going on around them” (“Frequently Asked Questions About Epilepsy,” 2022). Each individual might also have a different cause that contributed to their development of the condition. In some cases, the cause can be clearly identified, with such known contributors as “genetic factors, developmental brain abnormalities, infection, traumatic brain injury (TBI), stroke,” or brain tumors”; in many cases, including approximately half of the people who are facing epilepsy, the cause is unknown (“Epilepsy and Seizures,” 2023). However, despite all these differences, one common factor that exists among all such individuals is that, at some point in their lifetimes, nearly everyone diagnosed with epilepsy will have their lives impacted by the symptoms of the condition. As such, it is crucial that the significance of an epilepsy diagnosis is recognized–and that, consequently, it is both understood and treated accordingly.
First, it is incredibly important to understand that there are medications that can greatly help in managing the symptoms of epilepsy. As explained by the National Institute of Neurological Disorders and Stroke, “[m]ore than 40 different antiseizure medications are available today, all with different benefits and side effects” (“Epilepsy and Seizures,” 2023). However, while antiseizure medications are, by far, the most common way in which epilepsy has been treated, it is also critical to recognize that, in some cases, it may not be so simple. Not all medications–or, perhaps, even specific combinations of such drugs–have the same effectiveness in treating the disorder. While many seizures can be kept under control by just using one medication, “combinations of drugs, however, are still sometimes necessary for some forms of epilepsy that do not respond to a single drug” (“Epilepsy and Seizures,” 2023).
In determining which course of action will have the most effectiveness in the treatment of epilepsy symptoms, it must also be considered which types of epilepsy an individual is experiencing–whether generalized epilepsy, focal epilepsy, combined generalized and focal epilepsy, or an unknown epilepsy (Han & Sherrell, 2023). These are the four main types, which are largely based on the type of seizures they are experiencing (Han & Sherrell, 2023). Utilizing this as a major factor in deciding on treatment options is critical. While some medications might work for a certain type of epilepsy or are effective against specific types of seizures, they may actually have the unintended effect of worsening other types or causing even more harm (Nunez & Moawad, 2021).
When determining the best path forward for treatment, carefully considering a wide variety of factors regarding one’s individual experience with epilepsy–including seizure type–is not only important for the effectiveness of the treatment. Rather, it is also critical in efforts to better understand and prevent Sudden Unexplained Death in Epilepsy–the condition, also known as SUDEP, which tragically took the life of Cameron Boyce (Hoshaw, 2023). Improper treatment–such as not using anti-seizure medications as prescribed–is one of the primary factors that have been shown to increase the risk of SUDEP (Hoshaw, 2023). Other factors include, according to Healthline, a “history of frequent, uncontrollable seizures,” “convulsive or tonic-clonic seizures,” “having seizures since you were very young,” “a long history of epilepsy,” and “alcohol overuse” (Hoshaw, 2023). For individuals facing epilepsy–as well as the loved ones who are helping to care for them–even simply being aware of the impact that such factors might have can be crucial in managing the condition and preventing such tragic outcomes from taking place.
It is also crucial to dispel some of the most common misconceptions that exist surrounding epilepsy to create a broader, more accurate understanding of the neurological disorder throughout the general public. For instance, there are many who believe that anyone with epilepsy will experience symptoms of convulsions or losing consciousness (“Myths and Misconceptions,” n.d.). While such a description might most accurately describe a “tonic-clonic seizure,” there are many different types of seizures that one with epilepsy might experience, something which is incredibly important to recognize in any real, comprehensive understanding of the disorder (“Myths and Misconceptions,” n.d.).
Others believe that, when someone is experiencing a seizure, the best course of action is to restrain them. This, however, is another myth: as explained by the Epilepsy Foundation, “Restraining someone during a seizure is more likely to agitate or harm that person (or you). A seizure will run its course and restraining someone will not stop or slow it down” (“Myths and Misconceptions,” n.d.). It is important that, in helping to treat a seizure, the specific seizure first aid for that type of seizure be used. Some even presume that epilepsy is a “mental illness”; this, however, is also an entirely untrue misconception regarding the neurological disorder (“Myths and Misconceptions,” n.d.). All of these prominent myths and misconceptions surrounding epilepsy are not only incorrect but can also be harmful, both in the misperceptions they create and in the ways that they can negatively impact treatment. It is important, therefore, that these assumptions are recognized and that perspectives shift surrounding epilepsy and the experiences that an individual facing the disorder might have.
When the parents of Cameron Boyce were forced to grapple with the sudden and tragic death of their son, their grief mixed with shock and confusion when they were faced with his autopsy and the diagnosis of SUDEP that came with it. In fact, they had not even heard of the term SUDEP, even after years of helping Cameron to manage the symptoms of the condition; as stated by his mother, Libby Boyce, “‘We knew, obviously, it was going to be an issue in his life, but I never thought it was going to be something that would take his life’” (Hoshaw, 2023). After Cameron’s death, though, the Boyces knew that they needed to take action; today, the Cameron Boyce Foundation is still working toward its mission of not only increasing awareness surrounding epilepsy but also preventing anyone else from being so tragically blindsided in the way that Libby and Victor Boyce were (Hoshaw, 2023). In the world today, the importance of this purpose cannot be understated: by fostering awareness and allowing for both caregivers and those with the condition to better understand it, we will only grow closer to truly managing and reducing the impact of epilepsy–and, as a result, saving lives.
References:
Centers for Disease Control and Prevention. (2022, October 26). Frequently Asked Questions
About Epilepsy. Centers for Disease Control and Prevention. https://www.cdc.gov/epilepsy/about/faq.htm#What%20causes%20epilepsy
Han, S., & Sherrell, Z. (2023, April 5). What to know about 4 types of epilepsy. Medical News
Hoshaw, C. (2023, July 3). Late Actor Cameron Boyce's Legacy: Shining Needed Light on
Epilepsy. Healthline. https://www.healthline.com/health/epilepsy/cameron-boyce-foundation-interview
Myths and Misconceptions. Epilepsy Foundation. (n.d.).
Nunez, K., & Moawad, H. (2021, June 8). Are There Different Types of Epilepsy?. Healthline.
Stump, S. (2019, July 31). Cameron Boyce’s cause of death revealed by Los Angeles coroner.
U.S. Department of Health and Human Services. (2023, November 28). Epilepsy and Seizures.
National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/epilepsy-and-seizures
Comments