Woman Diagnosed with Rare Sleep Disorder After Years of Being Dismissed by Doctors
Health
Published April 7, 2024, 3:47 p.m. ET
A North Carolina woman who found herself dozing off all the time says she was diagnosed with idiopathic hypersomnia, a rare chronic sleep disorder. Alyssa Davis often found herself dozing off at school and in dance classes growing up, which she chalked up to not getting enough sleep.
However, the 26-year-old model and digital marketer grew increasingly concerned when she couldn’t resist the urge to close her eyes due to extreme exhaustion. Doctors dismissed her for years, suggesting she “just drink coffee” to combat her fatigue. Frustrated by the dismissals, she decided to participate in a clinical sleep study, which led to her diagnosis of idiopathic hypersomnia.
Idiopathic hypersomnia is a rare chronic sleep disorder with no known cause. It affects a small percentage of the population, with only up to 50 in every 1 million people having the condition. Symptoms include excessive sleepiness, dizziness or lightheadedness when standing, headaches, sleep paralysis, and brain fog.
Living with the condition has been challenging for Davis. She explained that she has to plan extensively just to complete simple tasks and that the exhaustion never dissipates. Despite sleeping for 10 to 14 hours, she wakes up feeling as if she hasn’t slept at all.
Davis reminisced about her childhood and how she always felt more tired than her friends and family. As she grew older, her exhaustion affected her daily life and confidence. Falling asleep in class and struggling to concentrate became daily occurrences for her.
Davis finally sought the help of a specialist after being repeatedly labeled as “lazy” and “careless” by other doctors. The specialist advised her to participate in a sleep study, confirming her condition. However, it has still been a struggle for Davis to manage her hypersomnia.
Fortunately, in 2021, the first medication for idiopathic hypersomnia was approved by the Food and Drug Administration. Davis is in the process of undergoing another sleep study to begin the medication, Xywav treatment. She hopes that by sharing her story, she can raise awareness about the sleep disorder and encourage others to seek medical attention.
Living with idiopathic hypersomnia has been a challenging journey for Davis. However, having a diagnosis has provided her with a sense of understanding and empowerment. She can now advocate for herself and fight for a better quality of life.
Sources:
Sleep Foundation
