Always sleepy? Narcolepsy may be more subtle than you think

ST. PETERSBURG, Fla. - Fourteen-year-old Kayla Johnson has been struggling with fatigue her whole life.

"I would not have the energy to go out with my family or just go in the living room and play a game with them," she says.

Sleep physician Dr. Luis Ortiz at Johns Hopkins All Children's Hospital recently told Kayla she has narcolepsy. It's a sleep disorder that affects about 200,000 Americans but is difficult to detect. On average, people suffer for 15 years before receiving a proper diagnosis.

"It was a hard pill to swallow, but I was relieved to find out what was wrong," recalled Kayla.

It's a sense of relief Dr. Ortiz could relate to.

"I was just the tired kid, the sleepy kid, the one who fell asleep in class all the time," he said.

Dr. Ortiz has been dealing with the effects of narcolepsy since he was 10.

"By high school, it was like clockwork. I could sit in the front of the class and be really into what I was listening to. Then, I'd be jolted awake because I fell asleep without realizing," he said.

Ortiz graduated high school, but fatigue took its toll in college. He was in danger of flunking out an entire semester. Dr. Ortiz never suspected an underlying problem, until he was handed a textbook with a section on sleep disorders.

"I was like, 'This person's story is me! This is me since I was 10 years old!'" he said.

After a sleep test, he was told he had narcolepsy: a diagnosis that changed his life.

"I definitely wanted to go into surgery when I went to medical school and I quickly learned that's not safe for my patients," recalled Ortiz.

As a pediatric sleep physician, Dr. Ortiz now uses his experiences to show patients with narcolepsy that a thriving life is possible through proper medication.

"I definitely do share often with my patients. I try to say, 'Yes, this is going to be tough, but it's possible to accomplish a lot,'" he said.

Kayla's mother, Margo Johnson said the doctor has been an inspiration.

"Seeing him be successful, being diagnosed and then go to medical school, we know it’s something that cannot hold her back from living her dreams," she said.

Kayla is doing much better with proper medication.

“I like the new Kayla. I like the energy and the smiles," said Margo.

"I'm more active and awake and I'm not grumpy. I'm definitely doing more things and talking to people more and being social," says Kayla.

Beyond treatment, Dr. Ortiz's goal is to educate.

If you suspect yourself or someone you know might suffer from narcolepsy, visit https://narcolepsynetwork.org/ for more information.