Why fashion entrepreneur Camila Coelho hid her epilepsy for so long

Camila Coelho opens up about epilepsy

Last Updated Feb 10, 2020 8:11 AM EST

Fashion entrepreneur Camila Coelho is speaking out about her epilepsy in hopes of changing the stigma around the neurological disorder. Epilepsy, which is characterized by unpredictable seizures, affects nearly 3.4 million people in the U.S. and about 50 million people worldwide.

Coelho, who walks exclusive red carpets and works with major designers, launched her own namesake fashion line last year. She has more than 8.5 million Instagram followers, and has hid her condition until recently. 

She was diagnosed when she was 9 years old.

"My hand started closing by itself … That's when I fainted and I had my seizure," Coelho told CBS News contributor Dr. Tara Narula. "It was like I went to sleep and the next thing I hear is my mom calling my name, and I couldn't answer her."

"My mom told me, 'Camila no one needs to know this, no one needs to know that you had a seizure or that you have epilepsy,' and I know my mom was trying to protect me," she said. "That was one of the reasons why I never opened up."

Coelho, who grew up in Brazil, started taking medication daily, but has had several seizures since her diagnosis more than two decades ago. She moved to the U.S. as a teenager, but continued to hide her condition as her career took off.

"Sometimes I would feel like people would think I was a little crazy because I had to take this medicine and because I had the seizure like something was wrong with my brain," she said.

Epilepsy is a neurological disorder that causes the brain to produce sudden, abnormal bursts of electrical energy. The resulting seizures could be as subtle as someone staring blankly into space to loss of consciousness, convulsions and, with certain seizures, even death.

Asked what the most difficult part of managing epilepsy has been, she said, "The most difficult time I would say would be now, thinking of having a baby."

A doctor recently told Coelho and her husband, Ícaro, that her seizure medication could increase the risk of an abnormal pregnancy, but also explained she could be at risk by going off the medication.

"If you do have a seizure while you're pregnant you could lose your baby," she said. "So I'm scared."

But for now, Coelho is continuing her medication, exercising regularly and making sure to get enough sleep, as tiredness can trigger a seizure. She also has had to turn down several professional opportunities to make sure she gets enough rest and manages stress. 

Coelho hopes sharing her struggles will make an impact. 

"I made the decision to talk about it because I really believe that I could help someone. If I help one person, it's already worth it for me," she said.

If you suspect someone is having a seizure, the Epilepsy Foundation says you should remain calm and stay with them, turn the person on their side and put something under their head. Call 911 if the seizure lasts more than five minutes.