Epilepsy is the fourth most common neurological disorder and is characterized by recurrent unprovoked seizures that can cause other health problems. 1 in 26 people in the US will be diagnosed with epilepsy in their lifetime and today, the US Centers for Disease & Prevention estimate approximately 3.4M people are living with epilepsy currently. As part of National Epilepsy Awareness month, Camila is continuing to raise awareness around epilepsy as part of her role on the board of the National Epilepsy Foundation.
As part of this effort, Camila recently shared her own story on living with epilepsy as a part of a new series from the National Epilepsy Foundation called eJourney, a community blog which features stories from around the country of people living with epilepsy. eJourney is not only a reflection of Camila’s story, but also the stories of many epilepsy warriors and their journeys navigating the epilepsies. Below please find Camila’s eJourney and for more information on epilepsy please visit epilepsy.com.
“My biggest goal is to use my story to educate our society and community about epilepsy and seizures,” said Camila. “What I’ve learned in this journey is that there are many people out there struggling with accepting themselves and feeling different because of their epilepsy. I’m hoping that my story inspires others to share theirs so that together we can create awareness and end the stigma associated with this condition.”
Adapted from Epilepsy Foundation
Tell us how you first learned that you had epilepsy?
My epilepsy eJourney began at the early age of 9 when I had my first seizure. I was playing with my friend and my fingers and hand started closing by themselves. My friend thought that I was joking. I ran to my mom and then fainted. My parents took me to a neurologist who diagnosed me with epilepsy.
What do you experience when you have a seizure?
When the seizures kick in, I don’t know or remember it, making it much harder for my family, husband and friends. Every seizure I’ve had has put me in the hospital and leaves me extremely emotional. Yet, each seizure I have is different.
I take anti-seizure medication every night that controls my seizures completely. The medication that I take makes me very sleepy, but it is the one that works for me. I consider myself blessed to have never had a seizure while taking medication. If I don’t take it, there is an increased risk of having a seizure.
I do worry that my lifestyle, including travel and sometimes a lack of sleep, could trigger my seizures. I make sure I eat well, don’t stay in the sun too long, and aim for 8-9 hours of sleep at night. Headaches are a sign that not everything is quite right, and I make sure I slow down, rest, and sleep more when I experience them.
How has epilepsy made you feel throughout your life?
I always felt different growing up. When my friends were out drinking, I couldn’t. I started to reject myself and my diagnosis, which led me to stop my anti-seizure medication when I was 17 without telling anyone. Not taking my medication caused me to have a seizure in school. Soon after, I realized that taking medication to keep me safe was nothing compared to what other people go through.
For the past 10 years, I’ve taken my medication as prescribed to keep me seizure free during my hectic lifestyle. I follow up with my doctor annually to get blood tests to monitor my medication levels and discuss my options for family planning.
In addition to making me sleepy, my medication can sometimes make me anxious or depressed so I work to manage those feelings so that they don’t overwhelm me. In 2019, I needed to take a break and spent 4 weeks with my family in Brazil.
Are there things you feel you can’t or shouldn’t do because of your diagnosis?
While I feel fortunate that my medication controls my seizures, I make sure to keep up a healthy lifestyle as well. I will often turn down professional engagements because I must put my health first. A lot of these opportunities, such as fashion shows and red carpets, seem very glamorous, but there are times when I can’t physically participate because these events may negatively impact my health.
I can’t drink alcohol because it triggers my seizures and it interacts with my medication. People always ask me why I don’t drink at parties because among my friends in Brazil and America, social drinking is considered a pastime. However, I have never had a drink because I fear drinking could put my health and life at risk. I’m still passionate about going out dancing and letting loose with my friends, and I know I can do that without having a drink.
What do you want others to take away from you sharing your story?
I don’t let epilepsy stop me from pursuing my dreams or leading an enjoyable life. My biggest goal is to use my story to educate our society and community about epilepsy and seizures. What I’ve learned in this journey is that there are many people out there struggling with accepting themselves and feeling different because of their epilepsy. I’m hoping that my story inspires others to share theirs so that together we can create awareness and end the stigma associated with this condition.