Have you ever wondered what it would be like to sleep for weeks at a time, missing birthdays, holidays and chunks of your life? For Bethany, this is her reality living with the extremely rare Kleine Levin Syndrome (KLS), often called "Sleeping Beauty Syndrome."
In this riveting episode of The Medical Maze podcast, Bethany generously shares her story battling KLS and the profound impact it's had on her life. Some of the key insights from her journey include:
The Diagnostic Odyssey
- Bethany started showing symptoms of KLS in 2015 at age 18, after the trauma of witnessing her father's suicide
- It took a full year of seeing countless doctors and undergoing numerous tests to finally get diagnosed
- She fell upon a doctor who just happened to have learned about KLS who recognized her symptoms
Life Interrupted
- During episodes, Bethany sleeps 18-20 hours/day for 2 weeks at a time in a sleepwalking-like state
- She has vivid hallucinations and nightmares of figures standing over her bed
- Bethany has missed major life events, been fired from jobs, and kicked out of college classes due to KLS
- Her cognitive ability is impaired both during and sometimes between episodes
Finding Effective Treatment
- There is no cure for KLS, but medication has reduced Bethany's episodes from monthly to every 2 years
- She takes high doses of the stimulant Provigil to maintain functionality; without it she cannot stay awake
- The expensive medication is not well-covered by insurance, costing her $400/month after using discount programs
- Certain medications are off-limits as they can trigger episodes, like Benadryl, Tylenol PM or anything that causes drowsiness
Support is Critical
- Bethany's mom and wife take turns staying with her 24/7 during episodes to ensure her safety
- They try to wake her to eat a couple times a day and take medications
- Finding a supportive partner was challenging but Bethany knew her wife was "the one" when she took the time to research and understand KLS
While there is still much unknown about KLS, Bethany's story sheds light on the realities of living with this often misunderstood condition. Her resilience and positivity are an inspiration. Despite major setbacks and challenges, she's persevered to graduate college and build a life and family.
Do you or someone you know have experience with KLS or another rare disorder? Share your stories in the comments below. For more information and support, visit the Kleine Levin Syndrome Foundation website.
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