Epilepsy at Orange: Looking into the lives of those affected
Illustration by Athena Heckman
Epilepsy is defined as a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
According to Dr. Anup Patel, Section Chief of Neurology at Nationwide Children’s Hospital, if someone has two or more seizures and there is no obvious reason, they have epilepsy. Epilepsy is a common disorder of the brain that causes recurring seizures. Epilepsy affects people of all ages, but children and older adults are more likely to have epilepsy. Seizures are the main sign of epilepsy and most people can control this with treatment. Some seizures can look like staring spells while other seizures can cause a person to collapse, stiffen or shake, and become unaware of what’s going on around them. Many times the cause is unknown.
“Epilepsy is an enemy, a scare, a sadness, a constant state of worry,” Sara Szasz mother of freshman Elizabeth Szasz said. Elizabeth was diagnosed with epilepsy at 11 months and immediately her parents didn’t want to label it as epilepsy. The word epilepsy carries so much stigma, Szasz was scared her friends and family would freak out at the thought of the disease.
Epilepsy has been around for millenniums, but unfortunately there is still no cure, only treatments. “We treat epilepsy with medications mostly. If someone has epilepsy from just a part of the brain, brain surgery to remove that specific area can sometimes cure it. Otherwise, we use medications, other surgeries, dietary therapy, or other devices,” Patel said.
Sophomore Julia Pfouts found out she had epilepsy her freshman year of high school when she had passed out for over five minutes when she went to CrossFit for the first time. Because this had never happened before, she went to the ER to see if something was wrong. All they told her was that nothing was wrong but to come back if it happened again.
After it happened three more times, they finally started to do testing, and they found that she had poly spikes in her brain, which show that the brain cells aren’t quite connecting. “They tested my brain by having me blow on a pinwheel, watch strobing lights and saw how my brain waves reacted to them,” Pfouts said.
For Pfouts, her epilepsy can hold her back occasionally. Everywhere she goes she has to make sure she always has her medicine with her, she has to think about if there will be anything that could trigger her seizures like extremely loud noises or flashing lights. Pfouts also can’t stay up late, like most teenagers, because it is seizure inducing.
One of the biggest downsides with epilepsy in high school is not being able to drive. Most people with epilepsy do get to drive eventually – they may just have to wait a little longer.
Because of all of these possible triggers, her family has to watch out for her constantly. “It definitely affects my family, we have to plan everything around it because I can’t drive. I won’t be able to until I am six months seizure free. Plus, I can’t be alone,” Pfouts said.
Every second, they are worried about when the next seizure will occur. Always in preparation for the worst possible scenario. Which prevents them from doing normal family activities like vacations, going out to dinner and going to the movies.
“Everything, everyday depends on how Elizabeth is doing,” says Szasz.
This disease not only takes over the life of the patient but their family. Having to constantly worry about what will happen next.
“It is sad that this disease has really affected both Steven (brother) and Catherine (sister). I am at the hospital a lot and miss a lot of their lives,” Szasz says.
Elizabeth takes multiple medications a day to help prevent her seizures but inevitably they do occur. Daily, she has short seizures and every 8-15 days she experiences a two hour long seizure and has to go to the hospital for treatments. The Szasz family considers the hospital their second home.
Having epilepsy can make the patients feel as if they aren’t experiencing the life they could be living as if they did not have the disease.
While Pfouts doesn’t feel like she is being held back from anything, she does feel like she has to be articulate about certain things. For instance, her routine has to be the same so that way the doctors know that it can’t be something that could cause a seizure. “I take eight anti-seizure pills plus folic acid daily to help with dehydration that is a side effect of the meds,” Pfouts said.
For some children, having epilepsy will not affect their ability to learn or achieve academically but others may need extra time or support in class. Seizures at night can disrupt sleep patterns and affect memory for some time afterwards. Anti-epileptic drugs can also cause side effects that include tiredness and problems with memory or concentration.
While epilepsy is hard to live with, it is not impossible. Everyday scientists are still looking for a cure and more possible treatments. There are several ways in which you can help the people affected by epilepsy.
The Epilepsy Foundation provides many different ways to donate such as, dropping off household items like clothing, shoes, accessories, small appliances, kitchenware, linens and toys. You can also donate online via https://donate.epilepsy.com/donate. You can also use this website to figure out where the closest donation center is to you.