'Until They're Diagnosed, There's Not A Lot That Helps Them': Young Woman Suffering From Narcolepsy Finds Help At Cohen Children's Medical Center
NEW YORK (CBSNewYork) -- It's been a tough year for teenagers balancing demands during the pandemic, and that can be even more difficult with a serious health problem.
CBS2's Hazel Sanchez spoke to one young woman who dealt with a frightening condition that was often misdiagnosed.
As a young teen, Anna Reynolds suffered with extreme difficulty staying awake during the day.
"I would start to miss school a lot," she said. "I would feel sick a lot of times or just really tired, and I just wanted to sleep all day."
She had other scary symptoms, too.
"My muscles were completely paralyzed, and my vision was having like disturbances. I couldn't really, like, see normally," Reynolds said.
Doctors misdiagnosed her for years.
"She was thought to have epilepsy because she would drop to the floor. She was thought to have psychiatric conditions, malingering, being anxious, depressed or even hysterical because she would sleep," said Dr. Sanjeev Kothare, director of pediatric neurology at Cohen Children's Medical Center.
Kothare diagnosed Reynolds with narcolepsy, a chronic sleep disorder known primarily for overwhelming daytime drowsiness and sudden attacks of sleep.
He says it can start as young as 7 but is often not diagnosed correctly until sufferers are in their 20s. It affects about 1 in 2,000 people.
"It's a difficult time as a parent because you're trying to do your best, and yet, for quite a while for people that have narcolepsy, until they're diagnosed, there's not a lot that helps them," said Paul Reynolds, Anna's dad.
Paul Reynolds said Anna was always so tired, he would just let her sleep. Her other symptoms were even more frightening.
"We did fear that she had schizophrenia or some kind of psychotic condition," Paul Reynolds said.
There is currently no cure, but Anna, now 21, manages her narcolepsy with diet, exercise, and medication.
"Getting treated really helped me come out of my shell and make new friends," Anna Reynolds said.
"It's an ongoing, debilitating condition that requires treatment, and it's really important, I think, for the population as a whole to know more about it and to know how they can recognize it in themselves or people they love and how they can support those people," Paul Reynolds said.
Doctors say the pandemic has made this condition more challenging with factors like irregular sleep schedules, increased screentime and fewer opportunities to get outside or exercise.
Symptoms to look out for include daytime sleepiness and hallucinations.
