November is National Epilepsy Awareness Month in the United States. For me, this is one of the most important awareness campaigns of the year. Maybe it is for you too – especially if it afflicts a member of your family, friend or even someone you work with. My daughter, Ella, 10, was diagnosed with epilepsy when she was seven months old. Up to that point, I had never seen anyone have a seizure, I only knew what I saw on TV. I had no clue about the warning signs, symptoms, or what to do for someone who is having a seizure. It’s been nearly 11 years since my daughter was diagnosed, and she’s still struggling with intractable epilepsy (refractory epilepsy), which means medications do not control her seizures 100% of the time. Intractable epilepsy affects up to 40% of patients diagnosed with epilepsy.
According to the Epilepsy Foundation, there are 65 million people living with epilepsy across the globe, about 1% of the population, and it affects over three million people in the US, including nearly 500,000 children. Males and females are almost equally affected, and it can be diagnosed at any age. While people of Hispanic descent are more likely than non-Hispanics to develop epilepsy, anyone can develop epilepsy regardless of race, nationality, or ethnicity. As part of #EpilepsyAwarenessMonth, I’m sharing my insights not only from a research-based perspective but also from my point of view as a caregiver.
1 in 100 people have epilepsy today
What is Epilepsy?
According to the Mayo Clinic, Epilepsy is a chronic condition in which individuals have recurrent, unprovoked seizures. Unprovoked means that the seizure is not caused by a known and reversible medical condition like alcohol withdrawal, legal and illegal drugs, or extremely low blood sugar. Generally speaking, doctors diagnose a person with epilepsy if they have had two unprovoked seizures occurring more than 24 hours apart. Epileptic seizures may be related to a brain injury or family history of seizures, but often the cause is completely unknown.
- Epilepsy is the fourth most common neurological disorder and affects people of all ages
- Epilepsy means the same thing as "seizure disorders"
- Epilepsy is characterized by unpredictable seizures and can cause other health problems
- Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
- A diagnosis of epilepsy does not indicate anything about the cause of the person's seizures or their severity
Source: The Epilepsy Foundation
Epilepsy Warning Signs
We’ve all seen what I like to call a “Hollywood seizure”, but not everyone’s seizures look like that. In fact, there are over 40 types of seizures, and they all don’t present like what you see on TV. The good news is that you don’t have to learn what each type of seizure looks like. Instead, you just need to learn to recognize six distinct warning signs:
1. Blank Stare
If you see someone staring off into space, they may be day-dreaming about winning the lottery or they may be having an absent seizure. These are bursts of abnormal electrical activity in the brain that typically last for a few seconds. People with absent seizures are generally fine after the seizure has stopped; however, this may lead to additional seizures in some individuals.
2. Chewing motion
This is a form of automatism - the performance of actions without conscious thought or intention – and it can be an easy way to recognize that something isn’t right. If someone is doing this and they aren’t eating something or chewing gum, you should take this as a sign that they may be having a seizure.
3. Fumbling with clothes
If you notice someone grabbing at his or her clothing, they may be looking for their keys or wallet, but it could mean that they are about to have a seizure.
4. Wandering around
We all wander around, but if someone looks disoriented or doesn’t respond to you, they may be about to go into a seizure, be in a seizure, or coming out of a seizure.
5. Shaking uncontrollably
This is the symptom we all ascribe to someone having a seizure. If you see a person doing this and they are unresponsive, immediately lay them down on the floor on their side.
6. Confused speech
If someone is fumbling for words, seems confused, frustrated and can’t understand your questions, they may be going into a seizure (they could be having a stroke, so learn to recognize those symptoms too).
Be aware that not everyone with epilepsy has an aura – a sign that tells them a seizure is about to happen – so it’s key that everyone learns to recognize the six warning signs above. If you notice someone displaying these warning signs, check on the person to make sure they are okay. If they seem confused or agitated, have them take a seat or lie down on the floor, make sure you move them away from any potential hazards and ask them some basic questions such as what time it is, where they are, their birthdate, and their name.
If you think they’ve had a seizure or are having a seizure, stay with them until additional help arrives. You should also reach out to their “in case of emergency contact”– you may find this information on a medical alert bracelet or their mobile phone.
1 in 26 will develop epilepsy in their lifetime
Dos and Don’ts
Now that you know the warning signs, what else should you do and not do? There are dozens of “old wives’ tales” regarding what to do when someone is having a seizure, so it’s important to know fact from fiction on how to care for someone who is having a seizure and when they come out of it (post-ictal). If you recognize someone is having a seizure:
- DO Get them in a comfortable position, typically on the floor, couch or bed, and lay them on their side. This may be very difficult if the person is having a tonic or tonic-clonic seizure, their bodies will be very stiff and rigid, so be careful moving them.
- DO Loosen restrictive clothing around the neck, such as ties or scarves.
- DO Time the seizure and call 911 for any seizure lasting more than five minutes.
- DO Check the person for signs of trauma to the head, body, and extremities, such as bruises, cuts or lacerations that may have occurred due to a fall.
- DO Remember, there is nothing you can do to stop a seizure once it’s started, so your #1 job is to protect the person from their surroundings.
- DO NOT attempt to put anything in the person’s mouth. The person will not swallow their tongue and it’s unlikely that they will bite it either. This is one of those old wives’ tales.
- DO NOT leave the person alone.
Once the person has stopped having a seizure, they may be sleepy, confused, unable to talk or walk, or angry or combative due to the confusion. It’s your job to reassure the person that they are safe and are going to be okay. There’s also a chance the person may have experienced incontinence, but it’s not your job to bring attention to this sensitive issue. The post-ictal phase may last a few minutes or a few hours. This all depends on the person, as well as the severity and duration of the seizure. There is nothing you can do to speed their recovery up, other than letting them rest. While there are rescue medicines available that can reduce the duration of a seizure, the administration of these drugs should only be done by a trained professional and with the patient’s privacy and dignity in mind.
30% of people with epilepsy have intractable epilepsy, which means medications do not control 100% of their seizures.
Raising Epilepsy Awareness: What Employers Can Do
As noted earlier, there is still a stigma around epilepsy, so it’s imperative that managers and supervisors respect the privacy of employees who have shared their medical condition with them. Employees are under no legal obligation to inform their employer, manager or staff of their medical conditions, including epilepsy. While this is not an advisable decision, many people with epilepsy worry that they may lose their jobs. This is why employers should do the following:
- Train employees to recognize the signs and symptoms of a seizure. You could literally save someone’s life. If you need a trainer, your local epilepsy foundation is a great resource, and they will be glad to conduct an onsite training seminar to help educate everyone in your organization.
- Post warning signs in areas that may present a risk to employees with epilepsy, such as areas where strobe or flashing lights are used and areas of extreme cold or heat.
- Post signs on how to treat someone who is having a seizure throughout the workplace. Check with your local epilepsy foundation to see what kind of awareness materials they have.
Epilepsy is one of the most misunderstood medical conditions out there. While most people with epilepsy lead otherwise healthy and fulfilling lives with very few restrictions, some choose to keep their diagnosis a secret because of the stigmas surrounding epilepsy. This can be a dangerous decision should they have a seizure while they are around people who may not be aware of the warning signs or how to properly respond to someone having a seizure. We need to continue to work to remove the stigmas around epilepsy, which is why National Epilepsy Awareness Month and World Epilepsy Day (March 26th) were created and are important. I encourage everyone to learn more about epilepsy at www.epilepsy.com and consider supporting your local Epilepsy Foundation chapter.
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