Hello and welcome to all of our fellow PWN and sufferers of those similar oh-so-frustrating sleep disorders! We are a dedicated narcolepsy support group.
Most likely, you found this page by searching for narcolepsy support, sleep disorder, or some variation of those words. What you have cyber-stumbled upon is a community designed to connect PWN (People With Narcolepsy), as well as those with similarly debilitating sleep disorders, from all walks of life and stage of diagnosis, and from all over the world. We are an organization of PWN that offers support, raises awareness, and provides information regarding narcolepsy, as well as similar conditions such as idiopathic hypersomnia.
We believe the medical community often overlooks these disorders, ergo, the system allows patients to remain untreated or under-treated. Left with a crippling condition and no place to turn, many patients have found themselves turning to despair. We understand. We’ve been there. However, if this describes you, take hope, for you are not alone, and we care.
Our organization created this site following the unfortunate discontinuation of a narcolepsy support forum hosted by Narcolepsy Network. For years, Narcolepsy Network hosted a message board where users could create and participate in forums discussing diagnosis, treatment, education and employment, and so much more.
The message board proved invaluable for many people struggling with their sleep disorders. The board facilitated connections with others experiencing similar problems and provided a way of cultivating knowledge from shared experiences. Well, we narcoleptics were not about to sit back and nap while our community disappeared. Less than 24 hours after starting a GoFundMe, we raised enough money to purchase this domain for the next three years, and here we are. Despite everything life levels against us, defeat remains elusive!
Our organization aims to continue the community that Narcolepsy Network began. Read through our forums, and take comfort in knowing that there are other people in the world going through similar experiences. Post questions and concerns with the confidence that this is a judgment free place. Learn from others’ trial and error with treatments. Vent about your frustration with your diagnosis and the terrible day you had.