Seeing purple in November always makes Elizabeth Spika Augustine smile. Purple is the awareness color for epilepsy and November is National Epilepsy Awareness Month. Put the two together, and it feels like a show of support for her and the nearly 3.5 million people in this country who live with epilepsy.
Elizabeth has dealt with epilepsy since she was four years old – a diagnosis that followed a grand mal seizure – and during the 23 years since, she’s had four surgeries and twice-daily medications to manage her seizures.
“Even if someone is wearing purple in November for another reason, it still makes me smile to see it,” Elizabeth says. “I think, ‘Thank you. You may not know it, but anyone with epilepsy who sees that will feel a sense of silent support.”
Epilepsy is More Than Seizures
Epilepsy is a brain disorder that causes seizures, which are changes in brain activity that can alter motor activity or behavior. A diagnosis of epilepsy usually follows a conversation with a patient about their symptoms, an electroencephalogram (EEG) to examine brainwaves and magnetic resonance imaging (MRI) to examine pictures of the brain. Although epilepsy most often occurs either very early in life or late in life, it can develop at any age.
“Epilepsy patients can become scared, understandably so, because seizures happen suddenly. They may feel that this disease is controlling them,” says Dr. Rajdeep Singh, Elizabeth’s neurologist and medical director of epilepsy and neurodiagnostics at Atrium Health Neurosciences Institute. “We put them at ease and tell them that this is a condition that we can control the majority of the time, and it’s not something that needs to control their life.”
Epilepsy involves more than seizures, of course. That’s why Atrium Health has a multidisciplinary team that supports patients with a well-rounded approach. Care and support come from experts across disciplines: epileptologists, neurologists, nurses, neurodiagnostic technologists, radiologists, care navigators, a and a dietitian.
“We take a holistic approach to the treatment of patients and this is reflected by our team. All of these people come together to help care for the patient and the different symptoms or side effects that they are having, even beyond the seizures,” Singh says.
Elizabeth’s epilepsy is due to an abnormal brain lesion that she’s had since birth. Because that lesion is very close to the part of her brain that controls motor activity, she’s not a good candidate for surgery to remove it without risking her ability to walk. Instead, Singh suggested implanting a device in her brain called a responsive neurostimulator (RNS) that tries to stop a seizure when signs indicate one may occur. It also gathers important data.
Fortunately, Atrium Health has a strong partnership with Carolina Neurosurgery & Spine Associates, one of the oldest and largest private neurosurgical practices in the country. The team works closely with neurosurgeons like Dr. Mark Van Poppel, He is the medical group expert in epilepsy for the practice, providing expertise in epileptic related care management and surgical intervention. He is also the medical director of Neurotrauma with Atrium Health Neurosciences Institute.
Van Poppel implanted the RNS device, Elizabeth say is “kind of like a pacemaker. I swipe this magnet over the side of my head and it records all the details of the seizure. All of that information goes to Dr. Singh and we can review it during our next appointment. That information guides my treatment.”
The RNS is just one way people can manage seizures due to epilepsy. Atrium Health is also one of a few centers in the country to offer another method, deep brain stimulation (DBS). This stimulation has already been proven effective to manage Parkinson’s disease, but has been shown to manage seizures, too. This commitment to offering the latest treatments and a multidisciplinary approach is part of the reason why Atrium Health Neurosciences Institute has the highest level of accreditation from the National Association of Epilepsy Centers.
Managing Life While Managing Epilepsy
One of the hardest challenges that Elizabeth faced with epilepsy was her dream of having a family. When she was younger, a doctor had told her that she wouldn’t be able to get pregnant while taking seizure medications – and without those medications, her epilepsy would not be managed. Because of this, Elizabeth was told she wouldn’t be able to have
biological children. Singh, however, told her otherwise.
“Dr. Singh is wonderful. He’s so great,” Elizabeth says. “When I was planning my wedding, I talked to Dr. Singh about wanting to have children and he told me that there are medications that are safe to take for epilepsy during pregnancy, so yes, I could have children. My husband and I were overjoyed. I’ve always wanted to be a mom.”
Since then, Elizabeth has gotten married. (Their wedding color? Purple, of course.) She’s had a baby boy and that little boy will soon become a big brother to her second baby.
Elizabeth hopes that more people realize how much epilepsy affects someone’s life, even beyond the seizures they experience.
“I don’t think people understand how serious epilepsy is,” she says. “Some people with epilepsy can’t drive, they can’t work, they can’t take a bath by themself. There are millions of people out there who need support and comfort.”
That’s why a simple sign – even just a bit of purple seen – feels like a sign of that support and comfort.
Learn more about expert epilepsy treatment at Atrium Health Neurosciences Institute.
Article updated on 2/9/23
