Reality Scoop: Epilepsy Awareness Month

I’m back with another round of Realistic Fiction for young adults!  November is Epilepsy Awareness Month.  Epilepsy affects about 2 million people in the United States and is characterized as recurrent, unprovoked seizures.  Of the 2 million, about 326,000 youth under the age of 18 have epilepsy and around 200,000 new cases are diagnosed every year.  Teens with epilepsy have seizures that start in the brain.  The brain uses electrical signals to pass messages between brain cells.  If these signals are disrupted, this can lead to a seizure.  For some teens, it will be a temporary problem, easily controlled with medication and outgrown after a few years.  For others, it may be a lifelong challenge affecting many areas of their lives.

Epilepsy is usually diagnosed when a teen has more than one seizure.  The types of seizures can vary.  Seizures can affect their feelings, cognizance, and even their movement.  Sometimes there is an aggregation or accumulation of seizures that may cause disorientation, unusual feelings, repeating movements, or they may even black out and suffer brief moments of unconsciousness.

The impact of epilepsy can be multifaceted for teens.  They are dealing with regular or normal teen issues and then on top of that they are hit with seizures.  This can aggravate or create problems of low self-esteem, dependency, mood swings, and sometimes behavior difficulties in adolescence.  Many teens struggle with epilepsy and it can be hard for them to come to terms with such a life changing condition.  Talking about any worries they may have and asking questions about epilepsy may help teens to make sense of what is happening to them.

In honor of Epilepsy Awareness Month, this month’s Reality Scoop focus on YA books will be teens living with epilepsy and the challenges they face as well as how it affects their lives.

Because You’ll Never Meet Me by Leah Thomas – Ollie and Moritz are best friends, but they can never meet.  Ollie is allergic to electricity.  Contact with it causes debilitating seizures.  Moritz has a weak heart and has a pacemaker.  The two are both hiding away from the world and by writing to each other a strong friendship is forged.  This keeps both boys sane in times of darkness and despair.  This is a story of how differences can bring two people together and how their struggles can reach beyond what is normal and what is fair and bring it back around to just being real people waiting to step out of the darkness.

Because youll never meet me

100 Sideways Miles by Andrew Smith – Finn Easton lives by miles not minutes.  While other people are looking at their watches, Finn is calculating in miles.  Sometimes he has seizures and he has a scar on his back from when a horse fell out of the sky.  He’s got an amazing best friend, the one and only Cade Hernandez.  The two go on an adventure together and end up being unlikely heroes.  The story blends together how a teen can live with epilepsy and still try to enjoy friendship and love, and still try to navigate the normal pitfalls of adolescence.

The Universe Versus Alex Woods by Gavin Extence – Alex Woods is not afraid to speak his mind.  He thinks a lot and he talks even more.  Alex could be considered annoying, but he’s not, he’s straightforward, trustworthy, and charming.  It’s the universe that really needs to figure the whole thing out not Alex.  Readers can go on a journey with Alex as explains his diagnosis of epilepsy and how he has had to deal with death and the questions that he has about his life going forward.

Universe versus Alex Woods 1

Zane’s Trace by Allan Wolf – Zane Guesswind is running from one tragedy right into another.  Unfortunately, it’s his own tragedy over and over again.  Zane has epilepsy and he jumps into a stolen 1969 Barracuda on his way to Zanesville, Ohio.  He brings along a six-pack of Mountain Dew, his brother’s driver’s license, and a big pack of black Sharpies.  Zane is in for a big surprise when he picks up Libba a hitchhiker and finds out that there is much closer to finding out who he is and how to deal with the effects of epilepsy on his life.

Zanes Trace Allan Wolf

A Handful of Stars by Barbara Girion – This is a classic young adult novel that dates back to 1983, although it has a timeless quality to it because it speaks to all teens that have ever felt out of place.  Julie is a busy high school sophomore who is suddenly stricken with epileptic seizures.  She must learn to live with her condition as the doctors attempt to control it through medication.  Julie struggles against the cruelty of her own friends and her own bitterness, searching desperately for her “handful of stars” and finding them in unexpected places.

If you or someone you know is a teenager with epilepsy you don’t have to struggle alone.  There are several resources available to assist you in navigating and handling the various aspects of epilepsy.  The CDC’s Managing Epilepsy Well (MEW) network is composed of individuals interested in improving the care of people with epilepsy.  The CDC is working to create management programs and tools that help those with epilepsy better  manage their disorder and improve their quality of life.  Teens with epilepsy seeking resources or information can go to the Youth & Teens Epilepsy Navigator created by the Epilepsy Foundation of America.

— Kimberli Buckley, currently reading The Syndrome by Ridley Pearson