Putting A Human Face on Epilepsy

In early civilizations the site of an epileptic seizure caused humanity to react in either terror or awe. The person living with epilepsy would be thought either possessed by evil spirits or as having the ability to speak with the gods.

Even in the nineteenth and early twentieth centuries parents hid away their son or daughter who suffered from the “scourge” in asylums to not bring harm to the family. It has only been in the last part of the nineteenth and this century that a deeper understanding, new tests, and treatments have been found.

What is Epilepsy?

 Epilepsy is a brain condition that affects the entire nervous system and disrupts normal brain activity. When the brain wave patterns become abnormal the person will experience an “electrical storm” in their brain or seizure.

What are Seizures?

 A seizure is a sudden, uncontrollable electrical disturbance in the brain that causes convulsions, periods of strange behavior and/or a loss of awareness. There are many different types of seizures that range by how severe they are, and they can last from thirty seconds to several minutes.

According to the Epilepsy Foundation, the following are some facts everyone should know about epilepsy.

 
 

  • 65 MILLION: Number of people around the world who have epilepsy.
  • 4 MILLION: Number of people in the United States who have epilepsy.
  • 1 in 26 people in the United States will develop epilepsy at some point in their lifetime.
  • Between 4 and 10 out of 1,000: Number of people on earth who live with active seizures at any one time.
  • 150,000: Number of new cases of epilepsy in the United States each year
  • ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
  • 6 out of 10: Number of people with epilepsy where the cause is unknown.

What is Going on in the Brain to Cause a Seizure?

When triggered, the electrical activity disturbance causes complex chemical changes to occur in the nerve cells inside the brain. When this occurs, the brain cells either excite or stop other brain cells from sending and receiving messages. Because there is normally a balance of this activity in the brain when too much or too little happens it leads to a burst of electrical activity causing the body to seize.

The Hardships of Living with Epilepsy

People who live with the diagnosis of epilepsy aren’t discernable from any other person you meet on the street. They are teachers, doctors, lawyers, mothers or fathers. We have put behind us the false notions that the seizures they occasionally fall prey to are evidence of evil or deity. Instead, we now understand that epileptics are people just like all the rest of humanity.

However, the hardships they encounter in life can be daunting.

Although epilepsy can be well-controlled by medications, some who live with epilepsy in their lives find they either have a difficult time finding work or holding down a job. This means these folks live on limited budgets often having to depend on social programs to live.

Another hardship they must face are the medications they take to control their seizures. These medications have some horrendous side-effects including extreme drowsiness and feeling spacy. It is very difficult to have a normal life when you feel like you are dragging yourself around in a fog a majority of the time.

Memory problems are also a problem that can happen in people who have epilepsy. Between their brain being a victim of the electrical storms that occasionally seize them and the drugs people living with epilepsy can find it exceedingly difficult to learn and remember information.

Some Common Fears of Those Living with Epilepsy

Data collected by Patient Next Door has enlightened us to the top three fears that people living with epilepsy have concerning their diagnosis. The results are below and give an insight into the life of someone living with this life-altering disorder.

The Fear of Dying Suddenly

The number one listed fear is having seizure activity in their sleep. Epilepsy Action Australia states that a seizure during sleep is usually triggered during one of the changes in sleep cycles but never in REM sleep.

Having a seizure in your sleep increases the risk of Sudden Unexpected Death in Epilepsy (SUDEP). This deadly phenomenon happens when a person has an unwitnessed seizure during their sleep and dies suddenly and prematurely.

The cause of SUDEP is unknown, but researchers are working hard to investigate and believe that the seizure activity may disrupt the breathing and the heart.

Approximately 1 per 1000 adults and 1 in 4,500 children diagnosed with epilepsy will die suddenly in their sleep from a seizure.

It’s easy to see why people with epilepsy live in fear of a nocturnal seizure.

Being Humiliated and Embarrassed

 

The number two fear expressed by the people living with epilepsy expressed in our survey was the fear of having a seizure in public or in front of their children.

If you have ever slipped and fallen in public, you can understand a little of what a person who has epilepsy goes through. Unfortunately, it is common for strangers to gawk at or worse yet, fear someone who is seizing before them on the sidewalk or in the grocery store.

The embarrassment and humiliation felt upon waking by someone living with epilepsy after a seizure in public are tremendous.

Children of parents who live with epilepsy become frightened or even traumatized seeing their mommy or daddy convulsing on the ground. Until they grow old enough to understand what is happening, these kids need extra love and care.

Having your child see you in such fear-invoking position as a severe convulsion must be to parents their greatest nightmare.

Fear for the Future

Like anyone else, people living with epilepsy have goals and hopes but their disorder may hold them back from totally realizing their dreams. Between the financial difficulties and the overarching lack of knowledge of when a seizure will strike, many epileptics fear for their family’s future

Just like you, these brave people dream of being a homeowner, having a career, and seeing their grandkids be born and grow. Unfortunately, the statistics of epilepsy say that folks with seizure disorders die younger than those living without it.

There are other effects of epilepsy on those who are diagnosed with it.

 

The Center for Disease Control and Prevention (CDC) states in a paper published in 2013 that adults with epilepsy had a higher prevalence of heart, lung, inflammatory and pain disorders than those living without the disease.

Also, people who live with epilepsy are prone to anxiety, depressive, and memory disorders that may keep them isolated and making their situation worse.

Kids Living with Epilepsy

Children living with epilepsy face many hurdles and require extra love, understanding, and care. They face bullying by the other children at school and a depressed ability to learn that is brought on by the medications to treat their condition.

The thought of having a seizure while at school in front of the other children must be mortifying for these kids.

Parents of children living with epilepsy express fear that their children will become discouraged and drop out of school ending any chances they have for a bright future.

Acceptance of the Diagnosis

 Although the symptoms are there for all to see, accepting the fact that one lives with diagnosis is very difficult. Just the knowledge that you will be prone to seizures all your life would be bad enough. Added to that grief there is the need to acknowledge you will be taking medications to prevent them the rest of your life.

 

Many sufferers of epilepsy are diagnosed as children and have never known a day without the fear of another seizure. They have always experienced the necessity of being in the presence of someone else. That means these people have never enjoyed a day alone where they felt safe and relaxed.

The people used to collect data on epilepsy by the Patient Next Door were asked to describe in a few words what living with epilepsy is like, and the results were heartbreaking.

  • Hard
  • Scary
  • Draining
  • Frustrating
  • Exhausting
  • Everyday emergency
  • Confusing
  • Awkward
  • A living hell

It is easy to see that having a diagnosis like epilepsy impacts lives enormously in both emotional and physical manners.

Things People Living with Epilepsy Want You to Understand 

 

We asked respondents to our survey to tell us what they wished people understood about epilepsy and decided to incorporate some of their answers into this piece.

Epilepsy is Not Contagious

 It may seem a no-brainer to most people, but there is still an undercurrent of fear that one can catch epilepsy. This is belief is absolutely false.

Epilepsy is a brain disorder and while its cause is not totally understood, it has never been shown to be contagious.

Epilepsy is Not a Curse

 Epilepsy is not caused by someone being cursed, being possessed by an evil spirit or as a punishment for past sins. Having epilepsy is not anyone’s fault including the parents of the person living with the condition and the person living with epilepsy themselves.

What to Do If You See Someone Having a Seizure

Knowing what to do is the number one thing on the list of things the people on our epilepsy survey stated they wished you knew about their disorder. So, to honor this, we have listed some of the important steps you can follow should you find yourself witnessing someone having a seizure.

First, it is vital to remain calm. Most seizures last only a few minutes and although the person will be exhausted when it is over if you follow these steps they should be unharmed.

Here are the general steps to take for any type of epileptic seizure as listed on the CDC’s epilepsy page.

  • Stay with the person until the seizure ends and he or she is fully awake.
  • After it ends, help the person sit in a safe place.
  • Once they are alert and able to communicate, tell them what happened in very simple terms.
  • Comfort the person and speak calmly.
  • Check to see if the person is wearing a medical bracelet or other emergency information.
  • Keep yourself and other people calm.
  • Offer to call a taxi or another person to make sure the person gets home safely.

Should the person be experiencing heavy seizing, then you will need to incorporate these following steps as well.

  • Ease the person to the ground.
  • Turn the person gently onto one side. This will help the person breathe.
  • Clear the area around the person of anything hard or sharp. This can prevent injury.
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Remove eyeglasses.
  • Loosen ties or anything around the neck that may make it hard to breathe.
  • Time the seizure. Call 911 if the seizure lasts longer than 5 minutes.

Always Remember…

It is important to try and always remember that epilepsy isn’t a weird or foreign disorder, it is a human one that changes lives every day. While many people living with epilepsy may not have the same thoughts and feelings as those expressed in our survey and thus here, many do.

People living with epilepsy are human beings first and as such deserve to be treated with respect, dignity and given every chance to succeed.

It is our hope that after reading this article you better understand the human side of epilepsy. Also, when hear someone joking about someone being a “spaz” you’ll remember how life-changing epilepsy is and gently correct them with some real information.

Epilepsy is a life-altering disorder where the brain has an electrical storm that rages uncontrollably and expectantly. It is not a curse, it is not a judgment, it is not a joke.

It is all too real.

Don’t forget to download and utilize our free Patient Next Door app onto your smartphone. With it, you can share the healthcare journey of you and your child with people who are facing similar conditions.

The app has no ads and will help you on your healthcare journey.

As always, we here at Patient Next Door love serving you and hope you will join us in aiding others in finding resources and hope.

We care about you.

Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.

 

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