For the Newly Diagnosed

Hello, and welcome to Strides Against Narcolepsy.  I started this blog in 2011, just a couple months after being diagnosed with narcolepsy with cataplexy.  I’m simultaneously glad you’re here and sorry you’re here – glad you’re searching for resources and support either for yourself or someone you know and sorry that you’re having to learn how to manage this disorder or learn how to help someone you know manage this disorder.  I’m pleased to provide a list of resources to facilitate your research and give you the tools you need to advocate for yourself.  If there is something missing, please feel free to email me at stridesagainstnarcolepsy@gmail.com.

To Learn More About Narcolepsy (Symptoms, Causes, Treatments, etc)

Stanford School of Medicine Center for Narcolepsy – information about the disorder including research updates and videos

National Institute of Neurological Disorders and Stroke’s Narcolepsy Fact Sheet

Narcolepsy on Wikipedia

Educating Others About Narcolepsy

Narcolepsy Network’s educational brochures cover a varitety of topics like narcolepsy in the classroom and narcolepsy Q&A.  If you become a member of Narcolepsy Network, they will also send you an information packet.

Narcolepsy advocate Julie Flygare has several awareness videos on her YouTube channel.

Dee Daud has been in documentaries and has made his own videos.

Finding Support

Narcolepsy Network keeps a list of support groups here.

If there is not an in-person group in your area or you’d like to seek support online, there are  several groups on Facebook:

Narcolepsy Network

Narcolepsy Friends

Gluten Free PWN

Autoimmune Disorders

Narcolepsy Blogs

Julie Flygare’s REM Runner Blog Narcolepsy advocate and author of “Wide Awake and Dreaming” keeps us up to date on her awareness/advocacy efforts.

The Madcap MissAdventures of a Narcoleptic – Shares how she kicked narcolepsy symptoms to the curb (mostly) by going gluten-free, low carb.

Autoimmune Patient – I love her science-y posts, even if I don’t understand them all!  Fellow gluten-free PWN.  She also blogs about other autoimmune disorders.

The Narcoleptic’s Wife – hasn’t been updated in a while but past posts may be beneficial to a spouse of a PWN

Making Narcolepsy Look Good – Active younger PWN with a great sense of humor.

Small Steps – Amanda is an inspriational teenager living with multiple illnesses and food intolerances.
There is also a narcolepsy chat held the first Saturday of the month on Twitter.  Follow me @stridesagainstN.  The hastag for the chat is #Nchat. You can see past chats by searching for Nchat on my blog.

 Crazy Narcolepsy – a good bit of humor and raw reality all rolled up into one blog.