Looking at Alexandra DeBourcy, you would never guess that she has a single health concern, especially anything serious. Unless you happened to see the MedicAlert ID on her wrist, you wouldn’t know that she’s been living with epilepsy since she was 5 years old.
You would never know the 34-year-old former advertising executive once woke up from a seizure unable to remember the name of the current president. Her teeth may look perfect, but that’s because the pageant winner broke her natural set in a fall during another seizure. Since the age of 5, Alexandra has been tackling the many different challenges of living with epilepsy.
Also known as a “seizure disorder,” epilepsy is a chronic neurological disorder that affects people at any age. The main symptom is unpredictable seizures. A seizure is a sudden, temporary surge of electrical activity in the brain that can affect a person’s appearance or behavior. The severity of the seizures differs from person to person, and not everyone has the same symptoms.
Alexandra’s parents and teachers first noticed a problem when they saw she was having muscle tics and involuntary movements. After being diagnosed with epilepsy, Alexandra started medication to control the seizures. Eventually, she no longer needed the treatment. Around age 12, however, she had several grand mal seizures at school, and doctors put her back on medication.
Because epilepsy isn’t widely understood, and every person’s condition is different, it can take time for someone to understand their individual triggers and find the right treatment. Many people with epilepsy try out a lot of different drugs and treatments before finding something that works.
Despite taking medication, Alexandra experienced breakthrough seizures throughout her twenties that made life a lot more complicated. Her condition did not get much compassion in the competitive, high-performance world of New York advertising.
“I definitely felt targeted because of my epilepsy,” Alexandra says. “I was kind of labeled ‘the weak one.’”
She learned to identify what was most likely to trigger her seizures, but her work environment kept presenting challenges. For example, a lack of sleep may contribute to her seizures, but she was scheduled to launch a new client website at midnight on a Sunday, and then expected to be at the office the next morning. Alcohol use was another potential trigger for seizures. Yet the company assigned her to handle an account for Scotch whiskey, which required her to sample the product with clients.
“The corporate setting can be very hard without someone to have your back,” she says.
The uncontrolled epilepsy, combined with a negative workplace, eventually prompted Alexandra to leave the corporate world. She used her time to look for ways to tell her story and promote epilepsy awareness. She reached out to the local chapter of the Epilepsy Foundation and offered to help. Grateful to find someone willing to share her experiences, the foundation connected her with speaking opportunities.
“There was really no one talking about it, and I was willing to talk about it, and I had time on my hands,” Alexandra explains. “The more I talked about it, the more opportunities came my way.”
Most people with epilepsy are hesitant to discuss their condition openly, concerned about how people will react or treat them, she says. Children with the disorder may become a target for bullying. People who do not understand epilepsy may have misconceptions that can shut out those living with the disorder.
Alexandra pushed back against the stigma and misunderstandings. She blogged about her experiences for the Metro New York chapter of the Epilepsy Foundation. She hosted community events, spoke to the Junior League of New York, and starred in commercials for the Epilepsy Foundation. For a new challenge, she entered, and won, the Mrs. NYC pageant. She was able to use the event as an opportunity to help raise epilepsy awareness.
Although unable to have children because of the medications she takes, Alexandra and her husband hope to adopt someday. In the meantime, she helps mentor children with epilepsy, including one girl in Missouri for whom Alexandra is a kind of “Secret Santa.” Grateful that she has been so open with her experiences and willing to connect with people, parents of children living with epilepsy have reached out to Alexandra from across the United States.
After leaving the corporate world, Alexandra combined her interest in fashion and science to pursue a new career as a licensed gemologist. Her love of jewelry has given her a special appreciation for the simple MedicAlert bracelet she wears on her wrist.
“I love it because people can see it, but it still blends in,” she says.“
It has been about 5 years since Alexandra last experienced a seizure, thanks to a variety of medications and understanding her personal triggers. She could get her driver’s license because she has been seizure-free for at least six months. She chooses not to drive, however, because she’s seen enough “on/off periods” that she would rather not risk it. Even now, she occasionally wakes up in fear, momentarily wondering where she is and if the seizures are back.
“Even when the seizures go away, life with epilepsy is never really ‘normal’,” she says. That’s why she is glad to wear her MedicAlert ID, giving her peace of mind that first responders know about her critical medical needs in case the seizures return.
“I feel more safe, more calm with MedicAlert,” she says. “It’s like a lifeline for me.”