The average person does not know epilepsy, despite the fact that 1 in 26 people will develop epilepsy at some point in their lives, epilepsy does not gain the same amount of attention as other disorders. As one of the 65 million people on Earth who suffers from this condition I would like to change that. November is Epilepsy Awareness month, and in honor of that, I would like to do my part to help people become more educated about this misunderstood condition.
Basic Information Regarding Epilepsy:
Throughout history epilepsy was one of the most feared and misunderstood diseases. Patients who suffered from uncontrolled seizures were thought to be possessed, practicing witchcraft, or punished by some greater power. While understanding of the disease has improved, much of epilepsy still remains a mystery. Today, a diagnosis of epilepsy is given when a patient suffers from two or more seizures that occur without provocation and do not seem medically reversible.
There are many reasons an individual may develop epilepsy. Some of the more obvious include the presence of a brain tumor or a traumatic brain injury, however, in most cases, the true cause of a person’s seizures remains a mystery. While understanding of epilepsy is not great, there have been great advances in the treatment of symptoms through the creation of new pharmaceuticals. With the use of various medications, it is now possible for an individual suffering from epilepsy to live seizure free and live normal and productive lives. While there are treatments available, there is still a long road ahead in terms of epilepsy research.
Common Misconceptions:
Due to a lack of public understanding as well as the complex nature of the disorder, there are a great many misconceptions surrounding individuals who suffer from it. Let me begin by saying that epilepsy is not contagious. Now that that is out of the way, perhaps one of the most widespread myths regarding epilepsy is that all cases are exactly the same. Be honest, when you hear the word “epileptic” you probably think of a person lying on the floor twitching uncontrollably while strobe lights flash. While it is true that flashing lights can be a trigger for certain individuals, there are a wide array seizure types as well as triggers.
The stereotypical seizure is a variety that is known as a tonic-clonic seizure and generally involves the convulsive twitching of the body as well as a loss of consciousness. It is important that not all seizures present in this manner, for instance during a focal (formerly known as partial seizure) the individual may become stiff with the only their eyelids moving. In another variety of seizure known as absence seizures, a person may remain conscious, but appear to lose focus for a moment.
It is also important to understand that not all individuals affected by epilepsy have specific triggers. Reflex epilepsy is a specific kind of epilepsy in which individuals are triggered by certain specific stimuli. While flashing lights are a trigger that is well known, stress, over-exhaustion, and low-blood sugar are also very common.
Finally, there is a great deal of misconception regarding the relationship between someone having epilepsy and their ability to have a productive life. When I was first diagnosed, I did everything I could to deny the diagnosis, because “I wasn’t like that”; I worried that I would never be allowed to learn how to drive, to go to college out of state, or be able to live independently one day. One of the major misconceptions I want people to unlearn is that a person diagnosed with epilepsy cannot lead a “normal” life. While epilepsy may have been a huge road block in the past, it is now possible for an epileptic to live seizure free and lead productive and responsible lives. It is very likely you know individuals who live with controlled epilepsy.
What to do if you see someone having a seizure:
Watching someone have a seizure can be terrifying, and it is not always intuitive to know what to do, here are some tips:
- Remain calm!
As in any medical crisis, it is important for you to remain calm.
- If they are not already on the ground, gently lower them there.
- Turn them the person on their side – Turning the individual on their side lessens the chance they will aspirate on their saliva.
- Place something soft under their neck to prevent them from injuring themselves.
- Time the seizure. This information can be extremely important later!
- If you are not aware of the individual having a history of seizures, a seizure lasts longer than five minutes, or a person has multiple seizures one after another call 911.
Even if you are aware of a person’s status as an epileptic, the longer a seizure continues, the less likely the person will be able to come out of it without a rescue medication.
Things you should not do if you see someone having a seizure:
- Hold the person down, or try to prevent them from moving. You will injure them.
- Place anything in their mouth. They could choke.
- Leave them alone before they have become fully aware of their surroundings.
I have had this condition for about five years, and am still trying to learn to live with it. I did everything I could to avoid saying “the E word” and denied that my diagnosis was a true representation of my condition. I hate having to tell my roommates at the beginning of the year about my condition, I hate the four-month long fight with the housing office, I hate the uncertainty that my condition brings. I just hate everything about it. But, in the end, ignoring a problem does not make it go away. I am slowly learning to accept my condition and am trying to embrace a policy of seeking greater understanding rather than fear. It is only through continued understanding that people’s lives get better. Although November is almost over, consider wearing some purple to promote epilepsy awareness.
If you want to learn more about epilepsy be sure to check out the Epilepsy Foundation Website.
Sources: https://www.epilepsy.com/