Despite the fact that epilepsy, a neurological disorder that causes seizures and unusual behavior, is one of the earliest recorded medical conditions and remains the most prevalent brain disorder on a global scale, misconceptions about epilepsy abound.
Through social media outreach and other efforts, the epilepsy community is working diligently to correct false beliefs the general public holds about epilepsy, to increase access to accurate information about this condition, and to highlight the pressing need for more effective treatments, informed care, and a higher investment in research on how to end epilepsy.
Before discussing three of the most prominent initiatives centered on raising epilepsy awareness, let's go over some basic facts about epilepsy.
What Is Epilepsy?
Let’s begin by saying that seizure is not synonymous with epilepsy—having a single seizure does not mean you have epilepsy, but having at least two episodes might point to an epilepsy diagnosis. Statistics compiled by the World Health Organization show that 1 out of every 10 people will have a seizure at some point in their lives, and 1 in 26 will receive a diagnosis of epilepsy.
Epilepsy is a neurological disorder that causes seizures and unusual behavior. Anyone can develop epilepsy, and taken altogether, the number of diagnoses are staggering. Experts put the number of cases worldwide at between 50 million and 65 million. When broken down by country, it appears that 3 million of those individuals live in the United States, where 150,000 new cases are diagnosed each year.
Those numbers surpass rates of Parkinson's disease, multiple sclerosis, autism spectrum disorders, and cerebral palsy combined. Despite that, research into epilepsy causes and treatments draws less than 10% of the funding dollars allocated to any one of those other neurological disorders.
Three Initiatives to Increase Epilepsy Awareness
To increase public awareness of epilepsy, the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) began organizing International Epilepsy Day in 2015. Celebrated on the second Monday of February each year, this global event aims to:
- Increase awareness about epilepsy among government officials as well as the public at large
- Create a sense of united purpose among epilepsy organizations worldwide
- Offer a major fundraising opportunity for nonprofit organizations focused on both the medical and social effects of epilepsy
- Encourage open, informed, empathetic conversations about epilepsy
The IBE and ILAE have membership representation in over 120 countries, leading to a diverse range of International Epilepsy Day celebrations. All share the intention of highlighting the impact of epilepsy not only on those with the condition but also on their family, loved ones, and caretakers too.
Given that epilepsy affects around 50 million people worldwide, it's rather fitting that more than one day has been devoted to increasing epilepsy awareness. Purple Day, also known as Epilepsy Awareness Day, was dreamed up by Cassidy Megan, a young girl living in Halifax, Canada, who was diagnosed with epilepsy at age 7.
“When I was first diagnosed I was scared and felt really alone, I thought I was the only kid with epilepsy. I didn’t know what it meant for me. I didn’t want anyone to know and I didn’t like my parents or anyone to talk about it. I was afraid I would lose all my friends and that people would make fun of me," Cassidy shared in a 2018 interview with Enable.
Cassidy and her parents, with support from the Epilepsy Association of Nova Scotia, put on the first Purple Day celebration—with all participants wearing purple to make epilepsy, a typically invisible condition, visible—on March 26, 2008. “I wanted to have just one day where the whole world could come together and let people with epilepsy know they were not alone—so that no one would feel like I did. I wanted people to learn about epilepsy and not be afraid," said Cassidy.
A year later, Purple Day went international when the New York-based Anita Kaufmann Foundation joined with Cassidy, her family, and the Epilepsy Association of Nova Scotia. Thanks to the ongoing efforts of the Purple Day team, celebrations have now taken place on every continent—including Antarctica!
In the United States, a whole month has been set aside to raise awareness about epilepsy. The Epilepsy Foundation designated November as National Epilepsy Awareness Month in 1969 and in 2003, Congress passed a formal resolution acknowledging and ratifying that designation.
What Causes Epilepsy?
What causes a seizure? For half the people with epilepsy, causes remain unknown, but for the other half, doctors have found the following possible causes.
- Genes: When epilepsy runs in families, it’s likely that genes are responsible for this condition—there may be as many as 500 genes related to epilepsy. If you have a family history of epilepsy, you may be at increased risk of seizure disorders. It should be noted that the overall likelihood you will develop a seizure disorder remains low. It's far more common for parents with epilepsy to have children who do not inherit the condition than who do.
- Prenatal injury: Babies in the womb are sensitive to brain damage that can be caused by several factors including infections in the mother, poor nutrition, and lack of oxygen. These conditions may result in the development of epilepsy.
- Head trauma: Head traumas result from blows to the head, such as those suffered during an auto accident or a fall. If the blow is severe enough, it can cause a traumatic brain injury, which can put you at risk of developing epilepsy.
- Brain disorders: When other issues transpire in your brain, such as tumors or the stoppage of blood flow caused by a stroke, they can cause epilepsy. In fact, researchers have found that strokes are one of the most common causes for epilepsy in individuals over the age of 35.
- Developmental disorders: Some experts believe epilepsy might be connected to developmental disorders, such as autism.
- Infectious diseases: Studies show that infectious diseases ranging from common viral infections to malaria, syphilis, tuberculosis, AIDS, and viral encephalitis may spur the development of epilepsy.
- Other diseases: Serious illness like vascular diseases, dementia, and Alzheimer’s disease can cause epilepsy.
Keep in mind that epilepsy does not affect your ability to have children, but some epilepsy medications can affect your baby in the womb. If you have epilepsy and are considering having a baby, talk to your doctor before becoming pregnant or as soon as you become pregnant to evaluate the best options for your health and the health of your baby.
Differentiating Between Seizure Types
Epilepsy describes, broadly, unusual activity in the brain. The presentation of symptoms varies depending on the type, but these are the signs and symptoms that people usually experience:
- Staring spell
- Uncontrollable movements
- Loss of consciousness
- Fear, anxiety, déjà vu
Depending on where the unusual brain activity occurs, seizures are classified as either focal or generalized.
Focal seizures, also called partial seizures, refer to seizures resulting from unusual activity in a single area of the brain. Because they affect only one brain region, symptoms can vary significantly. Focal seizures fall into two sub-categories depending on whether or not an individual loses consciousness.
- Focal seizures without loss of consciousness: You will be aware throughout the seizure and remember what transpired afterward. This type of seizure can cause symptoms like numbness and tingling, sudden alterations to mood, dizziness, hallucinations, and involuntary repetitive movements.
- Focal seizures with impaired awareness: You will not be aware of what's happening during the seizure, and may feel disoriented and fatigued afterward. This type of seizure can cause symptoms like nausea, twitching of the limbs, strange, rapid movements of the head or eyes, repetitive swallowing, nausea, and sweating.
Generalized seizures happen when abnormal activity occurs throughout the entire brain. This category is further divided into six sub-categories of different types of seizures.
- Absence seizures: Formerly called petite mal seizures, these often occur in children. The primary symptom can be easy to miss: a vacant stare. There may also be small, subtle body movements like blinking or smacking the lips. Typically, those who experience this type of seizure lose consciousness.
- Tonic seizures: The main effect of this type of seizure is the stiffening of your muscles, especially in your back and limbs. This type of seizure may cause you to fall to the ground.
- Atonic seizures: They are similar to tonic seizures because they affect the muscles, causing loss of control. Some refer to these as "drop seizures" because the loss of muscular control can result in falls.
- Clonic seizures: They cause jerking muscle contractions, most often seen in the limbs as well as the face and neck.
- Myoclonic seizures: They cause rapid jerks or twitches of the limbs.
- Tonic-clonic seizures: Historically known as grand mal seizures, this is the most serious type of seizure. In addition to sudden unconsciousness, other symptoms include convulsions, involuntary urination or defecation, and stiffening of muscles throughout the body, including the jaw, which can cause the teeth to clench down on the tongue.
What Triggers Seizures?
Seizures can be triggered by a variety of factors, and most of the time they are due to a combination of events. The most common triggers are:
- Bright or flashing lights
- Excessive or chronic stress
- Inadequate sleep
- Viruses and infections, especially when accompanied by a fever
- Erratic eating habits
- Specific ingredients
- Stimulants such as caffeine
- Depressants, including alcohol
- Certain medications
- Specific foods
It’s crucial for individuals with epilepsy to identify their specific seizure triggers, but doing so can be quite challenging. In many cases, it is the combination of multiple potential triggers that results in a seizure. One of the best ways to determine which factors are most likely to result in a seizure is by journaling. After each episode, record pertinent information in your seizure journal, for instance:
- Time of day
- Unusual stressors
- Food you ate
- Overall energy level
- Quality of sleep the previous night
Keeping a seizure journal can help you evaluate how well your treatments are working. It may be useful to take the journal to appointments with your doctor so they can adjust your treatment plan as needed based on the information you have collected.
The Current State of Epilepsy Treatment
Most people with epilepsy are able to find a treatment, or combination of treatments, that allows them to manage their epilepsy quite well. The appropriate treatment depends on an individual's symptoms, overall health, and response to previous treatment approaches. Epilepsy treatment options include the following five approaches.
Anti-epileptic drugs, also called anti-seizure drugs, can eliminate seizures or decrease the number of seizures you have. You can expect to try more than one medication, and more than one dose of each medication you try, as you and your doctor work together to find a treatment that works for you. Health care providers consider your age, general health, how often you have seizures, and other relevant health information when recommending anti-epileptic drugs.
Anti-seizure medications, as is true of many prescription drugs, may cause side effects such as impaired coordination, exhaustion, dizziness, weight increases, and skin rashes. In some instances, side effects may include severe, even suicidal, depression, as well as inflammation of the liver and other organs.
Always follow the instructions given for how to take your medications. If you experience strange shifts to your mood or behavior, or other unwanted symptoms, contact your doctor. Between 60-70% of people with epilepsy respond satisfactorily to the first anti-epilepsy drug they try. About 50% can stop taking medications after 2 to 5 years without a seizure.
2. Vagus Nerve Stimulation
When medication alone does not suffice, doctors often recommend the use of a vagus nerve stimulator. A surgeon implants this beneath the skin on the chest and threads a wire that connects the stimulator to the vagus nerve on the left side of the body. The device can then communicate with the brain, via the vagus nerve. Evidence indicates this can reduce seizures by 20% to 40%.
However, the surgical procedure used to place the stimulator does come with some risks. It's common for patients to experience a sore throat, difficulty breathing, hoarseness, and coughing spells.
3. Ketogenic Diet
Now a popular diet approach for many adults, the ketogenic diet originated as a means of treating intractable seizures in children. This high-fat, low-carbohydrate diet shifts the body away from using glucose (a form of sugar) from carbohydrates for its energy source. When you follow a ketogenic diet, your body produces chemicals called ketones from fat and uses those ketones as its primary energy source. According to some research, these chemicals help reduce seizures. In some cases, they can even eliminate them.
4. Brain Surgery
If other treatments do not achieve the desired results, your doctor may recommend brain surgery. The surgical approach used will depend on the type of epilepsy you have. Surgery can be a good option when tests show that your seizures originate in a small, well-defined area of your brain and the area does not interfere with vital functions such as speech, language, motor function, vision, or hearing.
In rare cases, surgery for epilepsy results in serious complications, including irreversible changes to your cognitive abilities. Prior to scheduling a surgery, be sure to have a thorough consultation with your prospective surgeon about their rates of success and of complications respectively.
5. Deep Brain Stimulation
This surgical procedure is a relatively new and novel approach to treating epilepsy. It involves placing a thin wire tipped with electrodes in the part of the brain called the thalamus and placing a device known as a pulse generator beneath the skin near the collarbone. The generator emits electrical pulses that travel along subcutaneous wires to the electrodes in the brain, where they help reduce seizures.
What Everyone Should Know About Seizure First Aid
Whether or not you know someone with epilepsy, it's highly worthwhile to have a basic grasp of simple seizure first aid. This will ensure that if you do see a person having a seizure, you can remain calm and offer effective assistance. All you need to do is to remember the Three Ss:
- Stay: If you see a person having a seizure, stay with them until they regain consciousness completely.
- Safe: While a person is actively having a seizure, try to clear their immediate environment of anything that could cause injury, such as hard or sharp items. Once they are alert, help them to a safe place and simply explain what just happened, as they will likely have no memory of the seizure itself.
- Side: If they begin to convulse, try to ease them to the floor and gently turn them onto their side, which will help them breathe. Place something soft beneath their head if possible and remove eyeglasses or ties if they are wearing them.
Though you may have heard that you should place something in a seizing person's mouth, this can actually cause injury to the teeth or the jaw, according to the Centers for Disease Control and Prevention (CDC). The CDC also states that you should refrain from trying to hold a person down or stop their movements, giving CPR, or offering food or water until the person is fully alert.
If a seizure lasts longer than 5 minutes, call 911.