ABOUT NARCOLEPSY AND RESOURCES FOR NARCOLEPSY
- Narcolepsy affects about 1 in approximately 2,000 people. The disease is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) Sleep and significant disruptions of the normal sleep/wake cycle.
- Contrary to common beliefs, people with narcolepsy do not spend a substantially greater proportion of their time asleep during a 24-hour period than do normal sleepers. In addition to daytime drowsiness and uncontrollable sleep episodes, most individuals also experience poor sleep quality that can involve frequent waking during nighttime sleep, and other sleep disorders.
- Symptoms of narcolepsy include excessive daytime sleepiness (EDS), an overwhelming sense of tiredness and fatigue throughout the day,micro-napping (falling asleep for a few seconds), and sleep attacks (an overwhelming urge to sleep). Some people with narcolepsy will experience Cataplexy (events during which a person has no reflex or voluntary muscle control. For example knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise anger)
- Narcolepsy is diagnosed through a sleep study, a set of medical tests including an overnight Polysomnogram (PSG) and a Multiple Sleep Latency Test (MSLT). Even when clear-cut cataplexy is present, a sleep study is necessary to rule out sleep apnea and other possible sleep disorders contributing to EDS.
- Contrary to common beliefs, people with narcolepsy do not spend a substantially greater proportion of their time asleep during a 24-hour period than do normal sleepers. In addition to daytime drowsiness and uncontrollable sleep episodes, most individuals also experience poor sleep quality that can involve frequent waking during nighttime sleep, and other sleep disorders.
Source: The Narcolepsy Network and the National Institutes of Health
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Danielle Brooks sleeps in the car during the 25-minute drive to swim practice. Her mom lets her snooze five more minutes in the parking lot. The 17-year-old wakes up grumpy and doesn’t feel like talking, so she and her mom silently enter an aquatics center in Gainesville.
Danielle snacks on a few almonds. She changes into a lime-green-and-black bathing suit, slips into a pool and feels better the moment the water touches her skin. As her intense, 90-minute swim practice begins, she’s no longer a teenager struggling with a serious illness. She’s conquering it.
Two-and-a-half years ago, Danielle was diagnosed with narcolepsy — a neurological sleep disorder that involves significant disruptions in the normal sleep/wake cycle. It is not uncommon. Her doctor, Dr. Gary Montgomery, a pediatric sleep specialist, treats about 60 pediatric patients at his practice, Georgia Pediatric Pulmonology Associates, and Children's Healthcare of Atlanta.
After the stunning diagnosis, Danielle had to give up swimming competitively. The grueling workouts she did to help her performance in swimming, using weights and heavy medicine balls, became too much. By the time she jumped in the water, her body was spent. She would fall into what is known as a “narcoleptic fog” while trying to complete long distance swims.
“I would go from one side to the other but couldn’t remember getting from one side to the other,” she said.
Then she heard about swim coach Andy Deichert of Gainesville. He is a coach who prides himself in thinking outside the box, a coach who was willing to take Danielle under his wing. Danielle returned to competitive swimming with a customized training regiment.
Deichert, head coach of Splash Aquatics Club in Gainesville, broke away from traditional training mentality that more is better, longer is better. He said that technique won’t cut it with Danielle. With her, pushing the limits increases risk of injury, he said.
“Because of the nature of her illness, she doesn’t have energy to burn,” says Deichert, a long-time coach with a long, slick pony tail. “She breaks down more easily. We have to go right to the exact point. We have to merge technique with high intensity and high heart rate.”
Danielle switched from distance swimming to 50 and 100 yards races.
With enduring talent and drive, she continues to shine.
In January, Danielle swam her fastest 50 yards freestyle ever, finishing at 24.23 seconds. The next Month at the High School State Meet, she swam the 50 free in 24.97 seconds, placing 8th overall in her division. She has come a long way in two years.
Danielle was 15 when the symptoms started. She would go from happily chatting with friends and family to face-down asleep. It happened at school, even at the dinner table. Her parents couldn’t figure out why their high achieving daughter was always drowsy and struggling to complete her homework. She was still swimming but inexplicably gained 25 pounds.
A clue emerged one day when Danielle’s knees buckled and her body went limp when her younger sister, Gianna, made her laugh.
Danielle thought it was funny, and decided to show her parents. It was a light bulb moment. Her parents, who had been baffled by their daughter’s bizarre change in behavior, recognized what they were witnessing — cataplexy, a sudden loss of muscle tone when experiencing strong emotions like laughter. It’s a tell-tale sign of narcolepsy.
Danielle, a high school junior, points to a good support network — family, friends, coach and teachers — for helping her stay positive and continuing to excel in the pool and school (she has maintained a 4.0 GPA).
Buford High School allows her to leave classes a little early. The arrangement allows her to swim when she still has energy, and she makes up class time with summer classes. She also turned to a gluten-free diet to help manage the symptoms.
“Every day she gets up and makes it to school and studies and does normal things, that is a great day,” said Diana Brooks, who is a stay-at-home mom. “It’s so easy to stay on the couch and stay asleep.”
Symptoms of narcolepsy usually show in adolescence, but the condition is often not diagnosed until young adulthood. Its cause is not known. Scientists believe it’s likely a combination of genetic factors and environmental triggers, such as a virus or other infection that triggers an autoimmune reaction. Doctors initially looked at infections, including exposure to the H1N1 virus and even H1N1 vaccination (which Danielle had a few months before her narcolepsy started) as playing a role, but they have since been ruled out a connection.
Montgomery said teenagers have challenges with getting enough sleep at night, waking up in the morning, and staying alert, motivated in class. But youngsters with narcolepsy can face an irresistible need for napping, he said.
Montgomery said wake-promoting medications can help manage the extreme sleepiness, but this often requires working closely with the parents, the student and the school to get the right medication and dose.
“Danielle has an energetic personality. She wants to achieve great things in her life, and she won’t let narcolepsy slow her down. She is so competitive and always strives to do her best,” said Montgomery.
Montgomery said narcolepsy-related sleepiness doesn’t typically strike while playing a sport, since the activity will mask the tendency to fall asleep. A bigger concern is the threat of cataplexy when the body can lose muscle tone and drop to the ground, since sports can elicit strong emotions.
For her part, Danielle works hard at keeping her emotions in check.
In October, she attended a national narcolepsy conference held here in Atlanta. She met several young people with narcolepsy who wrestle with intense fatigue, lack of energy and cataplexy. In some cases, they give up on activities they once enjoyed.
Danielle wants to be an advocate for the disease, which is often misunderstood and misdiagnosed.
“I wanted to keep going,” she said. “I decided I wouldn’t let this disease define me but make me a better, stronger person.”
At the conference, she toted a poster-sized canvas. She painted a black canvas to look like a chalkboard and wrote her favorite C.S Lewis quote: Hardships often prepare ordinary people for an extraordinary destiny.
