Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.
The narcolepsy 360 podcasts are a series of interviews that take a panoramic view of narcolepsy from the patient, care-giver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From latest research to life-style tips, our podcasts shed light on the less discussed issues around narcolepsy.
Join Claire Crisp, our Executive Director, as she chats every week with people within our community.
Welcome to the new season of Narcolepsy 360! Claire Crisp is an author, advocate, Executive Director at Wake Up Narcolepsy and mother of a child living with narcolepsy. In this episode, Claire shares her journey on deciding to write a memoir about the process to get her daughter, Matilda, properly diagnosed with narcolepsy. She also shares that through writing the book, her passion and dedication to supporting and advocating for families who are navigating life narcolepsy grew. So much so that she took on the role of Executive Director at Wake Up Narcolepsy!
Claire also tells us some exciting things that are happening at Wake Up Narcolepsy and how you can get involved. You can follow Claire at @londonerinla on Instagram, @clairecrisp1 on Twitter, and @claireccrisp on Facebook. Be sure to check out Claire’s book and blog at claireccrisp.com. If you are interested in any of the events, services, and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org.
Monica and David Gow are co-founders and board members of Wake Up Narcolepsy. They are parents of a young adult with narcolepsy. In this episode, Monica and David share their journey on getting their son properly diagnosed with narcolepsy. The struggle and gross negligence of doctors, who didn’t take their sons symptoms seriously, led them to start Wake Up Narcolepsy, a non-profit organization to raise research funds for a cure and raise awareness about narcolepsy.
This month they are celebrating the 10 year anniversary of Wake Up Narcolepsy. Monica and David also tell us about how it all started and what they hope Wake Up Narcolepsy offers in the next 10+ years.
Henry Nicholls is a person with narcolepsy, an author and science journalist specializing in evolutionary biology, conservation, the history of biology and sleep. His most recent publication is SLEEPYHEAD: The Neuroscience of a Good Night’s Rest.
In this episode, Henry shares about his own experience in getting his narcolepsy diagnosed and how he has been able to build a career through writing and journalism. He also details how in writing a book about sleep disorders, he was able to identify that he deals with multiple sleep disorders beyond narcolepsy, and also how this is common for people living with narcolepsy. He traveled all over the world interviewing sleep experts, clinicians, and researchers about sleep disorders– in many ways, it was clarifying and illuminating to see the science behind disorders that affect him. So much so that he has been able to achieve better sleeping habits and get actually restful sleep!
You can follow Henry @WayOfThePanda on Twitter and @SleepyheadByHenryNicholls on Facebook. If you are interested in learning more about his journalism and books, please go to http://henrynicholls.com.
Dr. Kiran Maski is a Pediatric Neurologist that specializes in Sleep Medicine. She is the Director of the Neurology Sleep Clinic at Boston Children’s Hospital.
In this episode, Dr. Maski shares how she got into studying Sleep Medicine and how she leads the Sleep Clinic at Boston Children’s Hospital. She also details how she brings in a group of other specialists that address the comorbidity that tends to come into to play with a narcolepsy diagnosis.
Dr. Maski is passionate about improving diagnostic delays and she has developed a screening tool to identify children and adolescents with narcolepsy and idiopathic hypersomnia in the community. With this tool, she hopes to bring awareness about CNS hypersomnia conditions to children, parents, teachers, school nurses, and healthcare providers. She is partnering with Wake Up Narcolepsy and other sleep centers to validate this Hypersomnia Screening Tool validated.
If you are interested in participating in the study please click here.
We are grateful for Dr. Maski who works to raise awareness of narcolepsy and prompt referrals to appropriate pediatric specialists for faster diagnoses.
Disclaimer: Since recording this episode, Sodium oxybate has been approved by the FDA for pediatric use.
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.
The narcolepsy 360 Podcast are produced by Elizabeth Windom and sponsored by Jazz Pharmaceuticals.