Leave a review!
Kylie Dennis O'Sullivan was diagnosed with narcolepsy type 1 at 12 years old — after years of being told by doctors that she was "just fat and lazy." In this Black History Month UK special, Kylie joins hosts Kerly and Sakhara to talk about growing up mixed-heritage in East London, the cataplexy episodes her mum mistook for night terrors, and the long road to her eventual diagnosis at Great Ormond Street Hospital — the first in her local borough in 20 years.
Now 38, Kylie is an M&E (mechanical and electrical) project manager in housing, a single mom to seven-month-old Myles, and a self-described "outside the box" thinker who's stopped apologizing for how her brain and body work. She talks candidly about PCOS, a possible ADHD overlap, workplace accommodations that actually work, pregnancy and a C-section shaped by her condition, and the role music plays in regulating her nervous system — plus the orexin science behind why none of this is "just about sleep."
Meet the Guest
Kylie Dennis O'Sullivan, 38, is based in East London and has lived with narcolepsy type 1 for 26 years, diagnosed at Great Ormond Street Hospital at age 12. She works as an M&E project manager in housing, is a single mom to her son Myles, and uses creativity and music as her outlet.
Chapters
- 00:00
- Show Intro
- 00:42
- Welcome & Introductions
- 01:08
- Weekly Check-In
- 02:47
- Meet Kylie & Diagnosis Basics
- 03:49
- Early Symptoms & Misdiagnosis
- 07:00
- Great Ormond Street Breakthrough
- 09:08
- School Life After Diagnosis
- 11:10
- Race, Family & Teen Challenges
- 14:43
- Medication, PCOS & Adult Care
- 17:59
- Weight, Metabolism & Gastric Bypass
- 22:39
- Living With Narcolepsy Long-Term
- 24:06
- Misconceptions, ADHD & Insomnia
- 26:28
- Ditching Sleep Pills
- 27:00
- Career Path Into Housing
- 28:40
- Hybrid Work With Narcolepsy
- 30:31
- Workplace Accommodations
- 32:52
- Single Mom Survival Mode
- 35:06
- Pregnancy & C-Section
- 38:07
- Rethinking Rest & Naps
- 42:35
- Creativity, Music & Orexin
- 47:40
- Exercise, Swimming & Limits
- 49:34
- Red Button & Closing Advice
- 52:19
- Patreon & Merch Shout-Out
- 53:25
- Outro & Community Info
Resources Mentioned
Great Ormond Street Hospital · Modafinil · Dexamfetamine · Professor Matthew Walker (neurologist) · Orexin agonists
Links
Website & support group: www.napsforlife.com
Share your story: narcolepsynavigators@gmail.com
Support the show: Patreon — www.patreon.com/NarcolepsyNavigators · Merch — merch.napsforlife.com/products
Support the show
Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences.
Follow and support Narcolepsy Navigators:
www.napsforlife.com
Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/
Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/
LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast
TikTok: https://www.tiktok.com/@narcolepsynavigators
Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast
***If you find these symptoms relatable, please seek medical advice.***
