by Marlena Tyldesley
My junior year of high school, I got the flu. I was sick for about a week and then began to feel abnormally sleepy, falling asleep for 5 hours after school every day and frequently in classes. One weekend, I tried to stand up and was too dizzy to stay upright without falling. From there, my health went downhill quickly. As the months went by, I started sleeping more and eating less. I slept for 12, 15, 17 hours a night. When I made it to school, I struggled to keep my eyes open or to engage in conversations. Alarms stopped waking me up and I developed chronic nausea with pain when I tried to eat. By that summer, I was asleep for 20 out of 24 hours a day and unable to eat anything.
During this time, I saw every specialist under the moon, and tried a whole host of medications and therapies. Two years later, I finally began to wake up. The medication that I took in the end was a powerful sedative, with the intention of putting me so deeply to sleep that I would wake up refreshed and awake in the morning. A year has passed now, and while most days I feel fully myself, just last week I missed an appointment because nothing - from my alarm to my roommates banging on my bedroom door - could wake me up.
I searched every corner of the internet between doctors appointments to try to find anyone else who had the same set of symptoms, and never found anything. Today, though, while researching medical mysteries for this month’s article selection, I came across a description of Kleine-Levin Syndrome (KLS), often called the “Hibernation” or “Sleeping Beauty” Syndrome.
I found an article on PubMed describing the condition, in which authors Olfunke Afolabi-Brown and Thornton Mason II outline a rare disorder often misdiagnosed as other sleep disorders, neurological disorders or psychiatric conditions. The authors describe a condition of recurring episodes of hypersomnia - excessive sleeping - with cognitive and behavioral issues in between episodes. There are no therapies to treat the syndrome, no biomarkers or tests that can be run, and no known causes. Symptoms include apathy, work avoidance, irritability and childishness when awake in a few patients, but they differ between people. Many of the patients discussed, for instance, were voraciously hungry during their episodes, while one patient refused food altogether.
KLS is estimated to affect 1.8 out of every million people in France. There is a 3:1 ratio of males to females who suffer from the syndrome. It typically begins in adolescence, with a median age of 15 years old, though females tend to present at older ages than males do. The authors report that mild infections often precede the initial KLS episode, although many other symptoms have been reported in the days before the exhaustion sets in (Afolabi-Brown & Mason II, 2016).
A search of the syndrome brought me to the Kleine-Levin Syndrome Foundation website, which reports that there is ongoing research into a gene called TRANK1, where a genetic polymorphism has been correlated with KLS when compared to healthy controls. The mean delay in diagnosis is 4 years, as many patients suffering from KLS are unable to obtain a correct diagnosis quickly (KLS research update in laboratory of Dr. Mignot, Stanford University (Oct 2018), n.d.).
It has been three and a half years since I got sick, putting me squarely in the time frame predicted to get a diagnosis. While an official diagnosis is still uncertain, finding a community of people with the same experiences as I have had is, as with any chronic illness, unbelievably comforting. The power of diagnoses is on full display here, and illustrates the importance of the medical community - from the researchers delving into the unknowns of human health to the doctors we love finally delivering the answers - to patients all over.
Afolabi-Brown, O., & Mason II, T. (2016, December 23). Kleine-Levin Syndrome. PubMed. https://pubmed.ncbi.nlm.nih.gov/28216256/
KLS research update in laboratory of Dr. Mignot, Stanford University (Oct 2018). (n.d.). Kleine-Levin Syndrome Foundation. https://klsfoundation.org/klsresearchupdate/