Narcolepsy Network (NN) and the entire narcolepsy community have long worked to dispel myths and misunderstanding about narcolepsy. When Honda Motor Company released a TV commercial using narcolepsy as a punch line, the community quickly and effectively lobbied to have the ad pulled from the airways and the internet. In addition, Honda was persuaded to make several PSAs about narcolepsy and air them on national TV.
NN is pleased that it could work with others in the narcolepsy community to seize the opportunity to increase awareness about narcolepsy with both a major international corporation and among the general public. NN continues to work to fulfill its mission to support people with narcolepsy and increase public awareness of narcolepsy.
How it happened
It all began on a Saturday night last June when Narcolepsy Network Board of Trustees member Dr. Mark Patterson received a message from a friend alerting him to the commercial.Read More
During the fall of 2004, Patrick O’Neill began having episodes where he would get weak and dizzy, and his vision would blur.
At the time, he was a college student, getting straight A’s in classes like honors organic chemistry.
At first, doctors thought his problems were stress related, but the incidents became more frequent and his episodes became cataplexy, where his muscles would weaken and he would collapse.
It wasn’t until the sixth or seventh doctor he saw that he got his diagnosis: narcolepsy.
He has been living with narcolepsy ever since. Now 29 and an AP Chemistry and Integrated Chemistry-Physics teacher at Munster High School, narcolepsy dominates O’Neill’s daily life.
He can’t drive, and even walking around town can be dangerous, which makes him highly dependent on others.
DUBLIN, June 2, 2014 /PRNewswire/ — Jazz Pharmaceuticals plc JAZZ +1.55% today presented data from the Phase 2b study evaluating JZP-110 (formerly known as ADX-N05) as a potential new treatment for the symptoms of excessive daytime sleepiness (EDS) in adults with narcolepsy. In the study, all primary and secondary endpoints were met and patients treated with JZP-110 experienced statistically significant improvements in objective and subjective symptoms of EDS. Based on these data, Jazz Pharmaceuticals plans to evaluate JZP-110 in Phase 3 clinical studies in patients with EDS associated with narcolepsy and in patients with EDS associated with obstructive sleep apnea (OSA), pending discussions with regulatory agencies.
These data were presented today at a late-breaker session during SLEEP 2014, the 28th Annual Meeting of the Associated Professional Sleep Societies (APSS), in Minneapolis, Minn. The annual SLEEP meeting is the premier U.S. conference for healthcare professionals, advocates and industry partners involved in sleep medicine.Read More
Debilitating condition left a once active, happy child too exhausted to play his beloved sports, plagued him with terrifying hallucinations and drove him to self-harm.
Alex Lawless, who developed narcolepsy after taking Pandemrix, with his mum Mairead. Picture: Ronan Lang
Terrifying hallucinations, aggressive behaviour, and threats of self-harm – the nightmare of narcolepsy has devastated the life of Dublin schoolboy Alexander Donovan.
The nine-year-old must take a 20-minute nap in school each morning at 10am, and another 30-minute doze in the afternoon when he returns to the family home in Rathgar.
This is despite the strong medication which his mother, Mairead Lawless, says, is actually licensed for use by adults, but which is crucial to keep Alex alert in the mornings, and provide the deep night-sleep denied him by his debilitating condition.
“It’s a struggle to keep him awake enough to do his homework.He struggles to concentrate and focus, and finds it difficult to pay attention in school.Read More
SPRINGFIELD, Mass. (WGGB) — It’s a disease that affects an estimated three million people around the world — but more than half will never be diagnosed.
We’ve seen portrayals of narcolepsy in movies and television, but what is living with the disorder really like?
Teenagers need a lot of sleep, but as East Longmeadow native Danielle Bousquet entered adolescence, she realized she was catching a lot more z’s than her classmates.
“I used to get up in the morning and take a shower and just lay down in the shower and fall asleep for a half hour, because I just couldn’t get up in the morning,” Bousquet explains.
And for 12 years, those symptoms got progressively worse.
“When I got into my Masters degree, it was probably closer to 14 to 18 hours a day that I was sleeping,” Bousquet says.
Doctor visit after doctor visit yielded little answers. It wasn’t until she turned 24 that she was finally and properly diagnosed.Read More
Published In Medical News
October 10, 2013
Lancet Neurology, a prestigious journal in its domain, publishes in its last issue, an article entitled “Pitolisant versus placebo and modafinil in patients with narcolepsy: a double-blind randomised trial” authored by Y. Dauvilliers and others from the HARMONY I study group which proposes a novel treatment for this orphan disease. It is accompanied by a Commentary entitled “A need for new treatments in narcolepsy”.
Narcolepsy is a rare disabling disorder mainly characterised by Excessive Daytime Sleepiness (EDS) and cataplexy, a sudden loss of muscular tone following various emotions. Present treatments comprise psychostimulants, like modafinil or amphetamine-like compounds, to fight EDS and sodium oxybate or antidepressants against cataplexy attacks. However these treatments are not fully satisfactory in terms of efficacy, tolerance or administration.
Pitolisant is the first representant of a new class of drugs to be introduced in the clinics, the histamine H3-receptor antagonists; it was designed in 3 European academic laboratories and developed by Bioprojet, a small independent French pharmaceutical company.Read More
Sharon M. O’Brien, MPAS, PA-CSeptember 25, 2013
There is a misconception about patients with narcolepsy. Too many patients, and providers alike, believe that a patient with narcolepsy is going to fall asleep when you have a conversation with them.
Many people remember River Phoenix in “My Own Private Idaho” a movie of the early 90s that depicted a young street hustler who had narcolepsy with cataplexy. The character had episodes where he suddenly fell in the street, overtaken by his illness. But not all patients with narcolepsy present this way.
The sleepiness and fatigue that characterizes narcolepsy can vary in degree. Some patients feel only mild fatigue, whereas other patients have difficulty staying awake, if not stimulated. To diagnose narcolepsy, a patient must have a multiple sleep latency test (MSLT).
This test is done during the course of a day and involves five naps that last 20 minutes each.Read More
Medical Director, Northside
Hospital Neurodiagnostic Laboratory
Medical Director, Neurotrials Medical Research Firm
Instructor, Northside Hospital School of Sleep Medicine Atlanta, GA
Click here for the audio interview with Dr. Michael Lacey, M.D
In the first half of this interview, Dr. Michael Lacey explains the causes and consequences of Excessive Daytime Sleepiness emphasizing the importance of a good night’s sleep to help recharge certain areas of the brain.
In the second half of the interview, Dr. Lacey discusses Narcolepsy, a rare, but potentially dangerous sleep disorder, including the symptoms, the procedure for diagnosing it, and the medications to treat it.
Excessive Daytime Sleepiness
DAN RUTZ: Before we get into narcolepsy specifically, let’s talk in more general terms about the problem of…of lack of energy, of sleepiness during the day.
MICHAEL LACEY: Sure.
DAN RUTZ: I assume we’re talking about something that a lot of people can identify with.Read More
A sleep disorder is a physical and psychological condition or disturbance of sleep and wakefulness caused by abnormalities that occur during sleep or by abnormalities of specific sleep mechanisms. Although the sleep disorder exists during sleep, recognizable symptoms manifest themselves during the day. Accurate diagnosis requires a polysomnogram, widely known as a “sleep test.”
It is estimated that some 40 million Americans suffer from chronic, long-term sleep disorders. Another 20 to 30 million Americans suffer from some kind of sleep disorder on an irregular basis. The annual costs in productivity, health care, and safety have been estimated in the billions of dollars.
What is Narcolepsy?
Narcolepsy is a neurological condition that causes patients to have excessive sleepiness during the day combined with recurring episodes of naps, particularly at inappropriate times.Read More
Dr. Jed Black, Director of the Stanford Sleep Disorders Center, was involved in the clinical trials for Xyrem, and answers our questions in the brief interview below:
TalkAboutSleep: Orphan’s new drug Xyrem treats the symptoms of narcolepsy. Which symptoms does it treat? What is the impact on those symptoms?
Dr. Black: Xyrem improves cataplexy, daytime alertness and nocturnal sleep. Improvement in any of these areas is often dramatic.
TalkAboutSleep: How does Xyrem work?
Dr. Black: Xyrem’s mechanism of action in narcolepsy symptoms is unclear. One component of its activity may be to improve the restorative nature of nocturnal sleep and thereby reduce symptom severity.
TalkAboutSleep: What is a typical dosage of Xyrem? How is it given?
Dr. Black: Xyrem is dosed in liquid form ranging from approximately 4-5 gram per night to 9-10 grams per night.
TalkAboutSleep: Are there any side-effects to Xyrem of any significance?
Dr. Black: Xyrem is taken at night because it causes marked sedation.Read More