Epilepsy Awareness One Purple Day at a Time

Epilepsy Awareness Day, also known as Purple Day, is observed every year on March 26 with the support of the Anita Kaufmann Foundation as a part of National Epilepsy Awareness Month. It was started by Cassidy Megan, a nine-year-old from Canada, to help people understand epilepsy and reduce the fear and stigma often associated with it. Purple, the official color for epilepsy, represents the campaign’s goal of encouraging open conversations about the condition and reminding those with seizures that they are not alone. People are encouraged to wear purple and show their support to help raise understanding of this brain disorder.

Epilepsy affects people in different ways. For some, it might not have a major effect on their daily life. For others, it can cause physical, emotional, and social challenges. It may influence a person’s education, job opportunities, health, lifestyle, and relationships with family and friends.

Epilepsy is often called a “hidden” condition because you can’t always tell if someone has it unless they have a noticeable seizure. In some cases, even the person with epilepsy might not realize they’ve had a seizure. Awareness of the condition is the first step to identifying epilepsy and seeking treatment.

How common is epilepsy?

In the United States, around 3.4 million people are living with epilepsy, including 3 million adults and 470,000 children. Each year, about 150,000 new cases are diagnosed. Globally, approximately 65 million people have epilepsy.

What exactly is epilepsy?

A seizure may occur when there is a disruption in the brain’s electrical activity. The brain normally sends electrical signals to control how the body moves and acts. During a seizure, this process is interrupted, which can cause changes in movement, behavior, awareness, or emotions.

Epilepsy can be diagnosed by a doctor after someone has at least two seizures without a clear cause. The incidence and symptoms of seizures and epilepsy can be very different from person to person, and not everyone who has a seizure is diagnosed as being epileptic. 

Can anyone get epilepsy?

Epilepsy can affect anyone, no matter their age, gender, culture, or financial situation. It can develop at any time during a person’s life, though it’s more common in children, teens, and adults over 60 years old.

Epilepsy can have several causes. It may be linked to brain problems that develop before birth, a lack of oxygen at birth, or a brain injury, such as from a serious head injury. Infections like meningitis or encephalitis can also lead to epilepsy. A stroke may cause brain scarring, which can trigger seizures, and brain tumors, whether cancerous or not, are another possible cause. Low blood sugar can affect how the brain works, and conditions like Alzheimer’s disease or other neurodegenerative disorders can increase the risk. Certain conditions, such as cerebral palsy or Down syndrome, also make epilepsy more likely. 

For many people diagnosed, the reason for their seizures isn’t immediately clear. In these cases, tests are needed to figure out what’s causing the condition. This is called idiopathic epilepsy.

What are the different types of seizures in epilepsy?

Epilepsy can cause many types of seizures, and a person might have one or several types. How someone acts during a seizure depends on the type they have and which part of the brain is involved.

Doctors group types of epilepsy based on the kind of seizures a person has. Seizures are sorted by where they begin in the brain, whether the person stays aware during the seizure, and if muscle movements happen or not.

Seizures are divided into two main groups:

Focal onset seizures

These seizures usually start on one side of the brain. They were previously known as partial seizures and are further divided into two types:

• Focal onset aware seizures: During this type, the person stays awake and aware of what’s happening. These were once called simple partial seizures. Symptoms can include:
  • Changes in senses, like how things taste, smell, or sound.
  • Emotional changes.
  • Uncontrollable jerking in the arms or legs.
  • Visual disturbances such as flashing lights 
  • Dizziness or experiencing tingling sensations.
• Focal onset impaired awareness seizures: In this type, the person may feel confused, lose awareness, or even lose consciousness. These were previously referred to as complex partial seizures. Symptoms might include:
  • Staring blankly into space.
  • Repeated movements such as eye blinking, lip-smacking, chewing motions, rubbing hands, or making small finger movements.

Generalized Onset Seizures

These seizures happen when a larger network of brain cells on both sides of the brain is involved at the same time. There are six different kinds of generalized seizures.

• Absence seizures happen when a person briefly loses awareness and appears to be staring into space. They might also have small movements, like blinking, smacking their lips, chewing, or rubbing their fingers. These seizures are more common in children, last only a few seconds, and are often mistaken for daydreaming. In the past, they were called petit mal seizures.
• Atonic seizures are when someone’s muscles suddenly lose strength or control. This can cause parts of their body to droop, like their eyelids or head, or they might fall to the ground. These seizures are very short, usually lasting less than 15 seconds, and are sometimes called drop seizures or drop attacks.
• Tonic seizures happen when the muscles suddenly become very stiff or tense. This can affect the arms, legs, back, or the whole body, often causing the person to fall. People may stay aware or feel slightly confused during these seizures, which usually last less than 20 seconds.
• Clonic seizures happen when muscles jerk repeatedly in a fast, rhythmic way. This jerking can last for a few seconds up to a minute. Sometimes, muscles first become stiff and then start jerking, lasting for a few seconds to about two minutes.
• Tonic-clonic seizures combine two phases: a tonic phase, where the muscles stiffen, and a clonic phase, where the muscles jerk rhythmically. These seizures, also called convulsions or formerly known as grand mal seizures, are what many people picture when they think of a seizure. During this type of seizure, a person loses consciousness, falls to the ground, and their body stiffens and jerks for about one to five minutes. They may bite their tongue, drool, or lose control of their bladder or bowels.
• Myoclonic seizures cause quick, shock-like muscle jerks or twitches. These seizures are very brief, usually lasting only a second or two.

How are seizures and epilepsy treated?

Seizures and epilepsy can be managed with treatments like anti-seizure medications, special diets (often combined with medications), and surgery.

Anti-seizure medications are the most common treatment and can control seizures in about 60% to 70% of people with epilepsy. Doctors tailor medication plans to each person, as everyone responds differently. There are over 20 FDA-approved anti-seizure medicines available. Some of the most commonly prescribed medications are:

A healthcare provider may need to test different medications, adjust doses, or combine drugs to find the most effective way to control a patient’s seizures.

For the other 30%, their epilepsy doesn’t respond to medication and is called uncontrolled or drug-resistant. These individuals may be offered other treatments like brain surgery or vagal nerve stimulation to help reduce or stop seizures. Some children with certain types of epilepsy may outgrow the condition as they get older.

Diet for seizures and epilepsy

The ketogenic diet and the modified Atkins diet are both high-fat, moderate-protein, and low-carb diets often suggested for people with epilepsy. These diets are usually recommended for children when medications don’t work and surgery isn’t an option. Another option, the low glycemic index diet, may also help lower seizure frequency in some people with epilepsy.

Surgery and devices for epilepsy

If anti-seizure medications aren’t able to control someone’s seizures, and the seizures are severe, their doctor might suggest surgery as an option. Epilepsy surgery can be a safe and effective choice, especially if two or more medications have already been tried without success.

Doctors may suggest different types of surgery to help with seizures. These options include removing abnormal brain tissue, cutting the connections between certain parts of the brain, using focused radiation to destroy problem areas, or placing devices in the brain that send electrical signals to reduce seizures over time.

With proper treatment and management, many people with seizures and epilepsy can live a normal life. This includes taking medication consistently, following a healthy lifestyle, and avoiding triggers that may cause seizures.

FAQs

Can epilepsy be prevented?

While many causes of seizures and epilepsy cannot be controlled or prevented, there are ways to lower the risk of certain conditions that might lead to it. For example, to reduce the chance of a serious head injury, people should always wear their seatbelt while driving and stay alert to avoid accidents. Wearing a helmet when biking and keeping floors free of clutter or cords can also help prevent falls.

To lower the risk of having a stroke, it’s important to eat a healthy diet, like the Mediterranean diet, stay at a healthy weight, and exercise regularly.

Getting help for substance abuse is also key. Alcohol and drugs can harm the brain, which might increase the risk of epilepsy. Taking these steps can make a difference in reducing risks.

Is there a cure for epilepsy?

Seizures and epilepsy cannot be cured, but there are several ways to manage and treat it such as medication, surgery, diet, and avoiding known triggers.

Will I always have seizures with epilepsy?

Around 7 out of 10 people can stop having seizures with the right treatment over time. The other 3 out of 10 have what’s called drug-resistant epilepsy. These individuals should visit an epilepsy center to see if surgery could be an option for them.

How long will I have to take anti-epileptic medications?

Whether someone can stop taking epilepsy medication depends on their type of epilepsy and how well the medication works for them. If a person has been seizure-free for several years, their doctor might decide it’s safe to stop the medication. This decision is based on several factors, like their medical history, MRI and EEG results, and whether there are any brain abnormalities. However, some people may need to stay on the medication for their entire life.