Strong as Stone
Reigning Miss Missouri United States, Erica Stone, uses her journey with epilepsy to educate others.
When she was in high school, Erica Stone didn’t tell her classmates she had epilepsy. Not that she was ashamed of it; she just didn’t feel like sharing that part of her life.
But now that she is the reigning Miss Missouri United States, she’s shouting it to the rooftops for all to hear, especially children.
Epilepsy education is the topic of her pageant platform.
Crowned on Feb. 7, 2015, Stone has no intention of slowing down on her mission now that her reign is coming to an end. Among other activities like parades and special appearances, she frequently talks to elementary school students about epilepsy and seizures, and what life is like when you have this neurological condition.
She refers to her epilepsy as her “bully,” telling the kids that elementary school is hard for almost everyone.
“There are bullies who pick on you, girls who have their little cliques, so I understand that; I’ve been through it,” she tells the kids. “But if I overcame my bully, then you can overcome anything you’re going through — school-related, family-related. You just got to keep thinking ahead and keep moving forward.”
They’re a little confused about what epilepsy is, Stone says.
“They don’t know what seizures are. I’ve only had one student say, ‘Oh, my family member has that.’ And I thought, ‘Finally, someone knows what it is.’
“Watching them learn about epilepsy is like, ‘Oh my gosh, I had no idea. This is very interesting.’ They kind of see the different side. It’s not scary. It’s not something to go away from. It’s something you should be able to talk about and be comfortable with.”
These teachable moments with the kids will come in handy for the 22-year-old Stone, who was raised in Sedalia and now lives in Warrensburg. She graduates in December from the University of Central Missouri with plans to become a kindergarten teacher.
At 6 feet tall with luxurious, long dark hair and luminous blue eyes, Stone is indeed deserving of her beauty-queen title. She’s smiles frequently and is open about her journey with epilepsy.
She began having seizures when she was 3 years old but wasn’t diagnosed with epilepsy until she was 6. Epilepsy does not run in her immediate family. Seizures occurred every few years, then got “hot and heavy” when she was in high school and college, she says.
Medications were not doing the trick, leaving her depressed and frustrated.
Dr. John Croom of Saint Luke's Hospital meets with Erica Stone.
Then a couple of years ago she met Dr. John Croom, medical director of Saint Luke’s Hospital’s Comprehensive Epilepsy Center, and things got a lot better. He put her on the right medicine, Lamotrigine, with the right dosage. The two met recently for an interview with 435 Magazine in his office at Saint Luke’s Plaza campus.
“I had a very depressing time my freshman year of college because I started back hard again having seizures,” Stone recalls. “I switched to Dr. Croom because I was really in a depressed state."
“That’s when he really woke me up, saying, ‘You’re OK. You’re completely normal. Your life is normal, but this is what we’re going to have to do to keep it like that.’ He kind of hit me with a reality shot. And I appreciated it because I was not in the right state of mind. I was so sad.”
Croom, who sees Stone every six months for checkups, not only gave Stone the proper medication but changed her lifestyle, she says. She knows her triggers are sleep deprivation and stress and is constantly making sure she eats a healthy diet.
She gets an “aura” that tells her a seizure is coming on, giving her a three- to five-minute warning to go lie down until it passes.
“I just get in my own little space and away from everything,” she says.
Since becoming Croom’s patient, she hasn’t had a seizure in two years, even though she had a couple of auras a year or so ago, thus prompting a close look at her medication dosage. Because she hasn’t had a seizure in more than six months, she is also allowed to drive a car.
Croom finds Stone truly inspirational.
“She’s taken the bully head-on,” he says. “She could have easily talked about anything else during her pageant competitions, but she’s embraced this and is getting out there and talking to kids.”
Likewise, Stone obviously is a big fan of Croom.
“He’s been so different from any other doctor I’ve been to,” she says, beaming a smile at him. “He actually talks about my future. That was what was most important to me — that he actually recognized that I’m going to be an adult someday. I appreciated it. He made me feel comfortable from the day I walked in.”
Croom explains that about 1 to 4 percent of the population has epilepsy, which equates to roughly 30,000 people in the Kanas City metropolitan area. Two-thirds can control their seizures with medication. Unfortunately, medications do not help about a third of the patients.
“For those patients, they might be candidates for surgery,” he says. “So if we can identify where the seizures are coming from in the brain, and that part of the brain is safe to remove, we can actually do a surgery to remove the seizure focus, and that can make a huge difference to some folks.”
If the patients aren’t candidates for surgery, he adds, there are devices that can be implanted to help make seizures better. One such device, called a responsive neurostimulator, has only been on the market about a year or so. New drugs have also been coming on the market.
Most patients do well on medications, Croom stressed.
“Erica’s proof of that,” he says. “You can live your life. Granted, you’ve got to take your medicine. And she knows she’s got to take care of herself. When other people are staying out partying real late, she knows she needs to be in bed by 9.
“She’s in her last year in college, doing very well as Miss Missouri. I’ve got a lot of patients like that who are successful. I’ve got doctors. I’ve got lawyers. I’ve got accountants. I’ve got teachers, basically the full range of personality.
“Because of Erica’s position as Miss Missouri, she’s gone out and talked to people about her epilepsy, talked to kids in school, but if she didn’t share that with you, no one would know.”
There is a lot of confusion about epilepsy, the doctor says, explaining that most people don’t understand that it can be treated with medication.
“They think it’s contagious, so they want to stay away from it,” Croom says. “So I think the more people like Erica who get out there and show people that, ‘Hey, we’re normal people,’ or super normal, in Erica’s case, is very inspirational. People realize there’s not a stigma, this isn’t contagious; this is a medical problem just like any other and needs to be treated and controlled with medication, and in the majority of patients it can be.
“It doesn’t need to be stigmatized. In some cases, it’s so stigmatized that people don’t seek medical help. They avoid it at all costs, keep it quiet and don’t get the help they need.”
For Stone, with the love, help and support of her doctor, family, friends and others close to her, there is much to be happy about. The future looks bright, she says, noting that epilepsy has made her a stronger person, mentally and physically.
“Without it I don’t think I would have the strength to tell myself that I can overcome anything,” she says. “It’s given me the mindset that I can, and I finally believed in myself because of it."