Although narcolepsy is often mistreated and misunderstood, there is a great deal of helpful information available online. Below is a list of resources I’ve found to be extremely helpful in understanding and treating narcolepsy.
WAY MORE THAN TIRED is an excellent resource for patients, doctors, or anyone interested who thinks they may have narcolepsy. You can take a sleep test here, and even find a sleep specialist near you.
I discovered the Narcolepsy Network (NN) in 2000, three years after I was diagnosed with narcolepsy. After attending my first NN conference, I finally began to understand narcolepsy. I found new ways to deal with this debilitating disorder. I was informed that there are many different medications that can help alleviate the symptoms. As I watched the entire audience sleep through the conference, I realized I was “normal”. I am so very grateful to have the NN. The treatments have come a long way over the years. When I went back for the 2008 NN conference the sleepy people were few and far between. The Narcolepsy Network also has a substantial listing of national support groups. The listings can be found here.
Wake Up Narcolepsy is a great non-profit organization dedicated to speeding narcolepsy diagnosis through greater awareness and raising money for research to find a cure. It was started by Kevin Cosgrove, and Monica and Dave Gow in 2008. WUN sponsors many events and other initiatives throughout the year, creating tons of awareness for narcolepsy while also raising much-needed research funding. These events are always fun and educational. I’m extremely grateful to everyone at WUN for putting in so much time and effort into this challenging, lifelong condition. Wake Up Narcolepsy is making a tremendous difference in the lives of so many people.
The Stanford School of Medicine’s Center for Narcolepsy is a world leader in narcolepsy research and treats hundreds of patients every year. They offer some very helpful information about the research being done on this condition, as well as medication information, and publication listings.
The University of California Los Angeles’ (UCLA) Center for Sleep Research has done a great deal of research on narcolepsy and has a lot of good information available online. Thank you Dr. Jerome Siegel.
HelpGuide.org is a non-profit online resource that has thorough information about the symptoms and treatments for narcolepsy.
National Sleep Foundation is where you can find anything and everything you want to know about sleep. Sleep is as important as diet and exercise. Sleep is where one recharges their batteries and consolidates memories. Sleep is where learning actually occurs. Take a look and see if you and your children are getting the sleep we need. They have a whole section on narcolepsy, click here to read more.
Talk About Sleep is another great resource for sleep questions and answers.
Finding a sleep specialist or a sleep center to treat narcolepsy can be a daunting task. The Narcolepsy Network (NN) has a resource to find a specialist or a center, but they don’t endorse one physician over another. Click here to see the information they provide.
Also, if you visit the UCLA Center for Sleep Research, they recommend the non-profit American Academy of Sleep Medicine (507-287-6006), which has a list of accredited sleep disorders treatment centers. See the AASM map for a sleep center near you.
The ESS is a simple survey that you can take to measure your general level of sleepiness in everyday situations. Click here to take the ESS. Make sure to also get an evaluation from your doctor, and share your ESS score especially if it is a 10 or higher.