Camila Coelho had her first seizure at 9 years old.
“My hand started closing and I realized something was wrong,” said the 32-year-old blogger and influencer. “My friend didn’t believe me, so I ran to her mom and that’s when I actually fainted.”
Coelho was rushed to the hospital where she received her diagnosis. “It affected me, the fear of having a seizure again and having my family and loved ones see me go through it,” Coelho said.
Her doctor assured her that she could manage her seizures with medication.
“The only thing I could not do was drink alcohol,” she said. “It was during my teenage years that my friend’s started partying, and because I took medication and I couldn’t drink alcohol, I started becoming insecure. I started to really reject myself, to feel different from other people, and I started rejecting the condition that I have.”
Coelho remembers her teenage years as a dark time.
“I decided to stop taking the medicine, without telling my mom or my doctors,” she said. “I ended up having a seizure in high school in front of all of my friends. I remember waking up in the hospital that day and just crying, feeling so guilty and scared. I could’ve taken my life that day.”
Coelho’s mother was a source of support and encouragement.
“She didn’t yell at me, she wasn’t mad, but she didn’t know that I was struggling so much. If I had talked to her, she could have talked to me before I made a decision to take out the medicine,” Coelho said.
Now with a huge online platform, Coelho opened up publicly about her epilepsy earlier this year for the first time.
“I started thinking, I have this huge platform, I have this amazing community, and this is the only thing I have never shared before,” she said. “So why not?”
A brave face
Speaking about epilepsy scared Coelho at first, but once she saw how many people she had encouraged to share their own stories, she knew it was worth it.
“I got to hear so many people’s stories, stories that really inspired me a lot and really helped me make decisions in my own life I’m living now, especially with pregnancy,” she said. “I got to help so many people who were feeling different, who are struggling with accepting themselves.”
Coelho is now an ambassador and board member for the Epilepsy Foundation. “Working with the Epilepsy Foundation, my biggest goal is to use my story to educate our society and community about epilepsy,” she said. “A lot of people don’t know what to do if you have a seizure next to them, or they wouldn’t even know what it is. I’m trying to educate my community on what epilepsy is and how to end stigma.”
Coelho’s advice for anyone struggling with epilepsy is to learn to accept yourself, and share your story.
“No matter what you’re going through, you are not alone,” she said. “If you believe in yourself, you are able to accomplish anything you want.”