Narcolepsy 360: Erin Carey


Manage episode 226344938 series 2127086
By Claire Crisp and Wake Up Narcolepsy. Discovered by Player FM and our community — copyright is owned by the publisher, not Player FM, and audio is streamed directly from their servers. Hit the Subscribe button to track updates in Player FM, or paste the feed URL into other podcast apps.

Erin Carey is a mother of five girls and two are CWN (children with narcolepsy). When Kyla started showing symptoms of narcolepsy Erin initially thought it was diabetes. When Kyla communicated she was falling asleep at school, Erin knew due to her sister’s own diagnosis of narcolepsy, that Kyla most likely had narcolepsy as well.

In this episode, Erin shares how once Kyla was properly diagnosed she knew that Kendall, Kyla’s younger sister, also had narcolepsy. Erin had her family get genetic testing to see if any of the other kids had the genetic marker. Kendall did and shortly after was diagnosed with narcolepsy.

As a mother two children with narcolepsy, Erin details how she works to allow her family to be able to do what they love. When it comes to medication, schedule and schooling Kyla and Kendall have differing plans, but the entire family has adapted to the Keto diet. Erin now is a keto coach and also started a non-profit FACES (Families and Children Experiencing Symptoms) of Narcolepsy.

You can follow Erin and learn more about FACES at and @FACESofNarcolepsy on Facebook. You can also learn more about keto on Keto with Erin Facebook Group

You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

44 episodes