First diagnosed with epilepsy at age 9, Camila Coelho is opening up about her struggles with the neurological disorder in hopes of helping others
For nine years, Camila Coelho has strived to be as transparent as possible with her millions of followers on social media.
But now the mega-influencer and fashion designer is bravely sharing a part of her life she’s kept secret for more than two decades: her battle with epilepsy.
“I was diagnosed when I was nine years old. I remember this day clearly,” the Brazilian-born beauty expert, 31, tells PEOPLE in this week’s issue. “I was playing with a friend and all of a sudden I feel my hands closing — my fingers, one by one.”
She continues: “I told my friend, ‘My hands are closing!’ and she was like, ‘Stop joking, Camila. I don’t believe you.’ Then I remember just fainting. When I woke up I heard my mom saying, ‘Camila, are you okay? Just talk to me.’ I wanted to respond, but I couldn’t.”
In her pre-teen years, Coelho says she felt like any other kid — simply one who had to take medication every night to control her seizures.
“My mom told me, ‘Camila, you are a normal child. You are going to live your normal life. There’s nothing you cannot do,’ ” she says of the encouragement she received from her mother Mary, who also suggested she keep her diagnosis private from everyone but her immediate family.
For all the details on Camila Coelho’s struggle with epilepsy and how she’s finding strength by sharing her story, pick up the latest issue of PEOPLE, on newsstands Friday. And to hear more from Coelho in her first television interview, tune in to CBS This Morning on International Epilepsy Day (Feb. 10).
“It wasn’t because she was ashamed,” says Coelho. “It was to protect me.” She heeded her mom’s advice, but after moving to Scranton, Pennsylvania at 14 years old following her parents’ divorce, Coelho says she started feeling insecure.
“I felt different, and I didn’t accept it. Why do I have to take medicine every night? Why can’t I drink?” Coelho — who had been warned by her doctors to avoid alcohol because of its interaction with her medication — remembers asking herself in high school. “I didn’t tell my mom, I didn’t tell my doctor — I decided to just stop the medicine.”
RELATED VIDEO: Smiley Therapy Dog Works at Children’s Hospital Alongside Her Doctor Parents
Within months, Coelho suffered a seizure in front of the entire school. “It was the most terrible day of my life,” she says. “I felt guilty. I felt stupid. It’s not like I actually wanted to drink or party. It was just that that little thing made me feel different.”
The incident was a wake-up call for Coelho, who had an emotional breakthrough in the hospital following the seizure.
“I learned something very important when I was 17,” she says. “I have this medication that can take my seizures away. I know that a lot of people, even taking the medication, still have them. And there are people in the world who have much more severe diseases, so why am I complaining? Since then I’ve been grateful for my life every single day.”
With the help of her husband, Icaro, Coelho — whose last seizure was in 2011 after doctors stopped her medication temporarily to see if she could go without it — has learned to prioritize her health and maintain balance in her often-hectic life.
Between juggling fashion week travel, photo shoots and brand partnerships, as well as running design meetings for her Camila Coelho Collection brand and filming content for her digital platforms, “I could be on 24 hours a day because I love what I do,” says Coelho, who’s had seven seizures in her life.
But lack of sleep and stress are triggers for her seizures, so “I say a lot of ‘No’s,’ ” says Coelho, who has 4.7 million subscribers to her YouTube channels and 8.6 million Instagram followers. “There comes times I need to cancel a few things because I get scared that something’s going to happen. I can’t affect my health because of my professional career.”
Her business partner and husband — with whom she first fell in love at 17 years old — has been her rock during her most challenging times.
“I know I can trust him. He always wants the best for me,” she says of Icaro’s unwavering support. “When I have a really bad headache, he’s like ‘Camila, you should rest. We need to take a step back.’ It’s very important to have Icaro as someone who pushes me to slow down.”
When she first began thinking about going public with her health struggles more than a year ago, Coelho says it was also her husband who assuaged her fears. “I was scared for him to say, ‘Oh, I don’t think you should share,’ but he supported me right away,” she says.
Now, “I feel liberated,” she adds of sharing her story, which Coelho hopes will bring comfort to others facing similar medical issues. “I regret not sharing when I was young because I could have been more free. But opening up is definitely helping me, and I hope it helps others too. I’m in a very happy place.”