Living with Narcolepsy Type 1 featuring Julie Flygare, JD

Sleep is My Waking Passion

Julie Flygare, JD, is President and CEO of Project Sleep as well as an awarding-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. She is internationally recognized as a patient-perspective leader and is an accomplished advocate living with with type 1 narcolepsy. She shares her journey and experiences in this podcast episode. She discusses her involvement in sleep advocacy and policy, the challenges she faced in getting a diagnosis, and the impact of medication on her treatment. Julie also talks about the emotional journey of living with narcolepsy and the importance of social support. She shares her passion for running marathons and finding endurance, and emphasizes the need for holistic approaches and medication in managing narcolepsy. In this conversation, Julie Flygare discusses various aspects of narcolepsy, including understanding the condition, diagnosing it, managing symptoms, and finding support. She emphasizes the importance of education, self-advocacy, and social support in coping with narcolepsy. Julie also highlights the evolving nature of people's experiences with the condition and encourages trying different approaches to find what works best for each individual.

Takeaways

• Sleep advocacy and policy play a crucial role in improving sleep health and raising awareness about sleep disorders.
• Getting a diagnosis for narcolepsy can be a long and challenging process, often requiring self-awareness and persistence.
• Medication is an important part of managing narcolepsy, but finding the right treatment and dosage can be a trial-and-error process.
• Living with narcolepsy involves not only physical symptoms but also emotional and social challenges, requiring support and understanding from loved ones.
• Engaging in activities like running marathons can be empowering for individuals with narcolepsy, but it's important to prioritize self-care and adapt to limitations.
• Social support and connecting with others who have narcolepsy can provide validation and understanding, helping individuals navigate their journey.
• Holistic approaches, such as lifestyle changes and supplements, can complement medication in managing narcolepsy, but individual experiences may vary.