Narcolepsy Care Page
Newly diagnosed – now what? Below is a list of useful resources to help you self-advocate.
Knowing about your disease is the first step in self-advocating. This includes knowing what it is, and (more importantly) what it isn’t. The Wikipedia page on Narcolepsy is one of the most comprehensive sources for information about narcolepsy. And, since it’s Wikipedia, it’s updated often with new developments.
Find other People
Many narcoleptics have never met another narcoleptic. Meeting someone like you can be an important and emotional event. There are several patient support organizations that have been created for the purpose of outreach and education. The best of these for finding others and becoming involved in the narcolepsy community is the Narcolepsy Network. In addition to yearly conferences (highly recommended), they also have a plethora of resources for doctors and educators that can be useful in self-advocacy work you may do.
Online communities (particularly Facebook groups) are another good way to connect with others.
Below are a few blogs of individuals with narcolepsy that are particularly inspiring when you’re feeling down:
REM runner : Author and narcolepsy spokesperson Julie Flygare is an influential and inspiring person.
The Madcap MissAdventures of a Narcoleptic: Gina tells her personal stories and struggles with narcolepsy, including her dietary intervention strategy.
Dee Daud: Best known for his television appearances, Dee has a great Youtube channel with many videos relating to narcolepsy and narcolepsy awareness.
Gluten Free PWN: a group for people who are using a gluten free diet to mitigate symptoms of Narcolepsy
PWN (Persons with Narcolepsy)