39 episodes

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 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle 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.

Narcolepsy 360 Wake Up Narcolepsy

    • Medicine
    • 4.8, 43 Ratings

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 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle 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.

    Narcolepsy 360: Dr. Deborah Hartman

    Narcolepsy 360: Dr. Deborah Hartman

    Dr. Deborah Hartman leads the global research program for narcolepsy and other sleep-wake disorders at Takeda, a biopharmaceutical company.
    In this episode, Dr. Hartman talks about Takeda’s approach to studying sleep-wake disorders and the importance of working together with people with narcolepsy to better understand what is needed, and with the scientific and medical community to develop potential new therapies. Dr. Hartman and Claire discuss the lack of understanding around narcolepsy, including the difference between narcolepsy type 1 and type 2. Importantly, Dr. Hartman digs into the science behind sleep-wake disorders, including the cause of narcolepsy type 1 and how researchers have identified the neuropeptide, orexin as the master regulator of sleep and wakefulness.
    Additionally, Dr. Hartman walks through the process of discovering a new drug and conducting clinical trials, as well as how the ongoing COVID-19 pandemic has impacted research worldwide. You can learn more about ongoing clinical trials in narcolepsy here: https://www.wakeupnarcolepsy.org/research/clinical-trials/.
    Thank you to Dr. Hartman for joining us and to Takeda for their partnership and ongoing research into sleep-wake disorders like narcolepsy. You can follow Takeda at @TakedaPharma on Twitter.
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 16 min
    Narcolepsy 360: Lauren Thomas

    Narcolepsy 360: Lauren Thomas

    TW: This episode discusses sexual assault and rape, which may be triggering for some individuals.
    Lauren Thomas is a person with narcolepsy, a narcolepsy advocate and works in the champagne business.
    In this vulnerable and candid episode, Lauren shares how she was diagnosed with narcolepsy just a little over a year and a half ago, but recounts how narcolepsy symptoms were part of her childhood. Lauren also shares her journey with mental health issues, which she now considers were linked to narcolepsy and directly contributed to her delayed diagnosis. After college, she finally saw an endocrinologist, who was helping her with weight loss and recommended a sleep study. This was a pivotal experience that led to a diagnosis of Type 1 Narcolepsy at the age of 28.
    Despite Lauren’s long journey to diagnosis, she’s taken time to fine tune her medication and adapt her life to support her symptom management, and during this period began to work for her family’s company, Cheurlin Champagne, the 1st African American-owned Champagne Company.
    Lauren also tested positive for COVID-19 this past March. She shares her experience fighting the virus and how her symptoms weren’t necessarily the standard symptoms being communicated.
    You can follow Lauren at @lmt826 on Instagram and her family’s business, Cheurlin Champagne, @cheurlin1788   on Instagram. If you are interested in finding out more information about Cheurlin Champagne go to www.cheurlin.com. Lauren recommends Wide Awake and Dreaming by Julie Flygare. She is on the planning committee for World Narcolepsy Day with Project Sleep. She also recommends an alarm clock called MedCenter. She says, “ I am obsessed with my talking alarm clock. I can set up to 4 different alarms at a time and it literally says ‘the time is .... this your reminder to take your meds..’ relentlessly, it’s annoyingly efficient!”
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 42 min
    Narcolepsy 360: Dr. David Ingram

    Narcolepsy 360: Dr. David Ingram

    Dr. David Ingram is a pediatric sleep physician at Children’s Mercy Hospital. In addition to caring for children with sleep problems in clinic, he is the founding editor of the ATS Pediatric Sleep Case Series and is adjunct faculty in the department of psychology where he teaches a college Sleep & Dreams course.
    In this episode, Dr. David Ingram shares when he first learned about sleep medicine and why he chose to become a sleep medicine clinician. Dr. Ingram also shares how he approaches his pediatric treatment of children with narcolepsy. Claire and Dr. Ingram discuss transitional care for CWNs, assessing driving readiness in adolescents with narcolepsy and current research he is conducting in collaboration with Wake Up Narcolepsy. Dr. Ingram shares what surprised him about his findings in the recent research study. Its purpose is to better define the delivery of comprehensive care for children with narcolepsy, with a multidisciplinary approach to treatment.
    Dr. Ingram will be presenting “Care for the Child with Narcolepsy: A Survey of Families and Providers” at our upcoming WUN Narcolepsy Webinar on July 18, 2020. This WUN Education Day is free and can be attended from the comfort of your home! Click here to register for the webinar.
    We are grateful to Dr. Ingram’s dedication to pediatric sleep medicine and his work to help expand the field's understanding of effective treatment for CWNs and their families.
    You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
     

    • 30 min
    Narcolepsy 360: Shannon Burkoth

    Narcolepsy 360: Shannon Burkoth

    Shannon Burkoth is a person with narcolepsy, mother, and narcolepsy advocate in the rare disease space.
    In this episode, Shannon shares how she was diagnosed with narcolepsy when she turned 30, but since then has realized she experienced narcolepsy symptoms since she was a child. Shannon also offers her journey to finding the right doctor and medication. She highlights how people with narcolepsy often deal with multiple comorbid issues which can be exacerbated with the wrong medication.
    Shannon also shares her journey to becoming a narcolepsy and rare disease advocate. She highlights the grief experience after being diagnosed and no longer able to do the activities she once enjoyed. Through conferences, meeting other advocates, and participating in the Rising Voices of Narcolepsy program, Shannon is empowered to share her story to educate and create awareness.
    Shannon thank you for your advocacy! You can follow Shannon at @shannon.burkoth on Instagram and @sburkoth on Facebook. You can learn more about Shannon’s advocacy work at shannonburkoth.com. Shannon says, “I want all people with narcolepsy to know they are not alone and there is an incredible community waiting to embrace them!” Shannon recommends Project Sleep’s Rising Voices of Narcolepsy program, Wake Up Narcolepy’s Online Support Groups, Narcolepsy 360 podcast, Wake Up Narcolepy’s Family Camp for CWN and Narcolepsy Network Annual Patient Conference.
    You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 35 min
    Narcoley 360: Kelly Main

    Narcoley 360: Kelly Main

    Kelly Main is a person with narcolepsy, studying law, and expert sailor living in New Zealand.
    In this episode, Kelly shares that she struggled with narcolepsy symptoms since her childhood, but because she was so active in sports her diagnosis was delayed. Doctors believed she was tired from growing and her very physical activity. Kelly has had a passion for sports and found herself excelling once she discovered sailing. She was on a competitive school sailing team, they ended competing in New Zealand & Australia Secondary School Championships. Her team won ALL the races that day.
    Kelly also shares her experience navigating friendships and social life while undiagnosed and how she struggled with people not understanding her sleepiness. In university, Kelly began researching her symptoms and found information on narcolepsy. She took the evidence to a doctor, conducted a sleep test and was diagnosed. This was less than a year ago.
    It was a pleasure to hear Kelly’s story. You can follow Kelly at @kelimain on Instagram.
    You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 34 min
    Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt

    Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt

    Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.
    We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure.
    We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.
    Wake Up Narcolepsy's Executive Director, Claire Crisp talks with Lindsay Jesteadt, Director of Development at Wake Up Narcolepsy. Claire has experiencing homeschooling and Lindsay has a PhD in Educational Leadership with an emphasis on Special Education Policies and Procedures. She has held an assistant principal position and teaching graduate-level students online. Both Claire and Lindsay are parents to children with narcolepsy.
    In this discussion, Claire and Lindsay share their current experience homeschooling their kids while working a fulltime job while safer at home protocols are in place. They share insights about the main issues the educational system is facing during the mandated homeschooling. They discuss from their experience the potential positives and negatives for CWN being educated at home. They share resources that may be helpful for students and parents who are experiencing homeschooling during this time.
    You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 48 min

Customer Reviews

4.8 out of 5
43 Ratings

43 Ratings

Harsh divine ,

Narcolepsy 360

This series is so informative. I enjoyed learning from the different perspectives of narcolepsy from the PWN to the science behind it. Looking forward to the second season.

kethans ,

Such a treasure for those affected by narcolepsy

As a PWN, I am always searching for stories of others with narcolepsy. I absolutely loved this podcast and hope there is more to come!

Winkebach ,

Refreshing, Emotional, and Vindicating

Narcolepsy is rare enough, that I have no one who can relate with my life experiences. It is refreshing, emotional, and vindicating to find and hear from others who know what life is like with narcolepsy and cataplexy. Two Thumbs Up!!!

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