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S4E1: Kleine Levin Syndrome: Parenting Through The Challenges
Manage episode 509439537 series 3564242
In this heartfelt episode of Narcolepsy Navigators, Gabrielle and Paul share their family’s journey of raising a child with Kleine Levin Syndrome (KLS), also known as “Sleeping Beauty Syndrome.” Speaking openly about the uncertainty, the emotional toll, and the small victories, they offer listeners an inside look at how KLS impacts their son’s daily life — from sleeping 16–20 hours a day during episodes to rediscovering joy when awake.
The conversation touches on:
- The challenges of finding a diagnosis in rural Maine.
- Navigating school, healthcare, and family life with a rare sleep disorder.
- What support systems truly mean for children and parents.
- Why raising awareness of KLS is critical to changing perceptions.
This episode is not only a story of resilience and advocacy, but also a reminder of the importance of community for families facing rare conditions.
Listen in and be inspired by their courage, honesty, and determination to give their son the best life possible.
Episode Out Now
#KleineLevinSyndrome #KLSAwareness #RareSleepDisorder #NarcolepsyPodcast #ParentingRareDisease #SleepHealthAdvocacy #ChildhoodSleepDisorder #InvisibleIllness #RareDiseasePodcast #KLSParentsPerspective #RareNeurologicalDisorder #IdiopathicHypersomnia #LivingWithKLS #RareDiseaseAwareness #SleepDisordersCommunity
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***If you find these symptoms relatable, please seek medical advice.***
Chapters
1. Introduction to Narcolepsy Navigators (00:00:00)
2. Meet the Hosts and Guests (00:00:42)
3. Discussing Klein Levin Syndrome (00:00:53)
4. Personal Experiences and Challenges (00:01:11)
5. Diagnosis Journey (00:03:35)
6. Living with Klein Levin Syndrome (00:07:04)
7. Medical Support and Community (00:09:19)
8. Coping Strategies and Daily Life (00:13:53)
9. Family Dynamics and Support (00:21:44)
10. Future Hopes and Reflections (00:25:37)
11. Understanding Jet's Episodes (00:40:48)
12. Impact on Family Dynamics (00:41:53)
13. Coping Mechanisms and Communication (00:44:03)
14. Challenges of Finding Support (00:46:07)
15. Emotional Struggles and Family Bonding (00:47:53)
16. Future Concerns and Independence (00:50:28)
17. Support Networks and Community (00:56:45)
18. Raising Awareness and Educating Others (00:58:46)
19. Final Thoughts and Reflections (01:04:16)
39 episodes
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