For as long as Maeve Sheehy can remember, she’s had short spells of feeling like she was about to fall over.
“It wasn’t like feeling faint, it was more like my knees would buckle underneath me,” says Maeve, now 16. “I would instinctually try to keep from falling by bracing myself.”
Sometimes the bracing didn’t work and Maeve would topple over. If she was with friends, she’d pretend she had tripped, to cover it up. But she secretly worried something was wrong with her. When she tried to explain the falling feeling to her parents and doctors, she was told she was probably dehydrated.
More mysterious symptoms
As she entered middle school, Maeve started to have other symptoms. She felt exhausted all the time, despite regular naps. Sometimes, she was so tired in class that she couldn’t even hold her pen to take notes.
“Her eyes also seemed droopy and she had slow speech,” says Maeve’s mom Kim. “We took her to the pediatrician and she was tested for thyroid problems, allergies and Lyme disease, but all the tests all came back negative.”
Maeve shares her story in a TED Talk.
Convinced something was not right, Maeve did what any computer-savvy teen might — she Googled her symptoms. The results surprised her.
“I learned that the falling over feeling was a symptom of cataplexy, a loss of muscle control that’s associated with narcolepsy,” says Maeve. “I just didn’t think it was possible I could have such a rare condition.”
She mentioned her narcolepsy to her parents, and they agreed it was an unlikely diagnosis. But a year later, as Maeve’s symptoms continued to get worse, they were referred to Dr. Kiran Maski, sleep clinics director at Boston Children’s Hospital. Maski met with Maeve and recommended a sleep study.
Maeve and her parents met with Maski a few days later to get the results — narcolepsy with cataplexy.
“Dr. Maski spent a lot of time talking to me about the diagnosis and the science behind narcolepsy,” says Maeve. “She didn’t just talk to my parents. That was really important to me because I wanted to understand what was going on inside my brain.”
It was an overwhelming diagnosis, but it brought Maeve a huge sense of relief. “To have all my symptoms explained, and to finally have a name for it was a real turning point for me,” says Maeve. “I knew it wasn’t just in my head.”
Learning to live with narcolepsy
The diagnosis was just the first step in getting back to a normal teenage life — the next step was finding a treatment plan.
“Maeve had sleepiness and cataplexy that were pretty difficult to control,” says Maski. “She failed all conventional treatments for pediatric narcolepsy, so she was started on sodium oxybate, a potent sedating medication used at night, currently approved only for adults with narcolepsy with cataplexy.” A pediatric clinical trial for sodium oxybate is currently ongoing and Maski is the principal investigator for this trial at Boston Children’s.
“That medication was really a last resort,” says Maeve. “But now that I’m taking it, I’m very grateful because it’s been life changing. I finally feel like I have my condition under control.”
In addition to taking several medications, Maeve must also adhere to a rigid daily schedule to keep her symptoms in check — not always easy when you’re a teenager.
“I have to be very strict with my schedule and with timing my medications, so sometimes I can’t do certain things my friends are doing because I can’t stay up too late.”
Maeve continues to see Maski every few months to make sure things are going well.
She’s also gotten a little extra help from Dr. Eric Zhou, a Boston Children’s psychologist who specializes in sleep disorders.
“He’s been super helpful in getting me into routines, and how I can constructively help myself in case my meds don’t work or I forget a dose,” says Maeve.
Horses, running and TED
Now that her symptoms are under control, Maeve has turned her focus back to school and her two favorite hobbies, horseback riding and running. She also coaches middle school girls who are training for long distance races.
One of Maeve’s proudest accomplishments since her diagnosis is having her very own TED Talk. It’s just one way she’s trying to spread awareness of narcolepsy.
“Having narcolepsy has given me a deeper understanding of the challenges other people face,” says Maeve. “One real gift that TED gave to me was the chance to connect with other people who have this disease, and to see that they are doing the things they love. That made it less overwhelming, and that’s what I hope people take away from what I’m doing.”
Her experience with narcolepsy and working with Maski has also sparked her interest in medicine. She plans on looking at colleges over the summer.
“I’m thinking about neurology or psychology, or maybe some blend of the two,” says Maeve. “I’m really interested in research around ‘invisible diseases’ like narcolepsy.”
Learn more about Boston Children’s Sleep Center.