For individuals with the sleep disorder narcolepsy, the non-profit organization called Narcolepsy Network provides education materials and support that might prove invaluable.
What is the Narcolepsy Network?
The Narcolepsy Network is a non-profit organization that works on behalf of people with narcolepsy. They consider it their mission "to provide services to educate, advocate, support and improve awareness of this neurological sleep disorder." It originated as a task force of the American Narcolepsy Association and became independently incorporated in April 1986.
It now includes some 1,400 members, with the involvement of people with narcolepsy, family and friends, as well as professionals involved in their care, including more than 25 sleep centers. The Narcolepsy Network also holds an annual patient conference.
What Resources Does the Narcolepsy Network Provide?
As part of its mission, the Narcolepsy Network provides educational materials about narcolepsy. You can learn whether you might have symptoms suggestive of narcolepsy and take an assessment called the Epworth sleepiness scale. On their website, there is an excellent collection of frequently asked questions (FAQs) that address more than a dozen topics related to narcolepsy, including symptoms, causes, diagnosis, and treatments. They also provide personal patient stories that describe the first-hand experience of narcolepsy with an opportunity to contact the author.
The treatment resources provided are particularly helpful. You can read about the medications used to treat narcolepsy, including some of the more common options, including:
The Narcolepsy Network also provides a link to a sleep log to track your sleep. In addition, you can find tips to promote wakefulness, recommended lifestyle adjustments, and a discussion of alternative therapies.
You can also access a collection of comprehensive resources on narcolepsy. There are links to documents in PDF format, brochures, research papers, and recorded materials on CD and audiotape from their annual conference.
In addition, they also provide helpful links to online support groups as well as ways to find local sleep specialists and patient support groups. The Narcolepsy Network also maintains a message board, or discussion forum, with hundreds of topics and thousands of responses.
Many of these aforementioned resources are available at no cost, but members can obtain additional access to narcolepsy-related materials. Membership also allows greater participation in advocacy and other endeavors.
How Can I Get Involved with the Narcolepsy Network?
It is possible to financially support the efforts of the Narcolepsy Network through various means. You can do so by making a donation. Annual membership is also available for $35. If you find yourself experiencing financial hardship, this will not prevent your participation in the organization, as complimentary memberships can be obtained. Membership includes a membership kit, a quarterly newsletter, invitation to special events, access to support systems, advocacy, and voting privileges within the organization.
There are also opportunities to participate in research, including in studies conducted at Stanford University’s Center for Narcolepsy.
The Narcolepsy Network also coordinates other ways to get involved and support others with the condition.
Where Can I Learn More About Narcolepsy Network?
If you wish to learn more about the Narcolepsy Network, you can start by checking out their website. You can also reach them via telephone toll-free by dialing (888) 292-6522.
Narcolepsy Network. Accessed: March 2012.