A genetic condition characterised by excessive and involuntary day-time sleep, is what fourteen year old Courtney has experienced since birth. Narcolepsy is a chronic sleep disorder where the brain is unable to correctly regulate the sleep-wake cycles, rendering sufferers to a state of sleep hidden behind open eyes. It usually presents itself after reaching puberty, however in rare cases it can be pre-pubescent, and this is what occurred with Courtney.
‘Snore Australia’ is the largest organisation analyzing sleep disorders, claiming that narcolepsy affects three million people worldwide. The primary symptoms for narcolepsy sufferers are extreme daytime sleepiness, hallucinations and microsleeps. Micro-sleeps are brief, involuntary episodes of sleep that can last for 2 – 30 seconds at a time, where a patient can look awake, when they are actually asleep. For Courtney, these microsleeps, disguised by a blank stare, occur four times every hour she is awake, and range from 4 – 20 seconds each time. Her sound, sight and touch senses close off, despite her eyes being open, leaving no outward indication of this occurring.
According to her mother, Jennifer, unusual things began to occur shortly after birth, stating, “she wasn’t tracking things with her eyes.” This unusual behaviour left specialists concerned that she may be blind. As the years progressed, Courtney’s pre-school teachers also brought attention to the fact she was not following instructions like the other children were, leaving them to suggest that Courtney may have a hearing impairment. Courtney was continually assessed by various specialists, none of whom could find the hidden reason for the variety of unusual symptoms that presented themselves on a regular basis. Finally after a number of years, and much investigation, Courtney was diagnosed with narcolepsy at the age of eight.
Bubbly, vivacious and quirky are words to describe the now teenage Courtney, yet behind her extroverted personality lies this condition that is increasingly impacting upon her ability to perform at the expected level for her intelligence at school, as she would often miss instructions due to her hidden sleep patterns. Recommended medication to counter this issue, presented a further problem of stunted growth. Consequently, this medication is monitored to maximise Courtney’s mental, as well as physical health.
A key issue faced by Courtney and her family at present, is what will occur when she reaches puberty. It is a hidden quantity as the impact of her symptoms can lessen or increase. Should her symptoms progress, as is being indicated, narcolepsy will affect Courtney’s job prospects in the future, her ability to drive a vehicle and her capability of performing general everyday activities.
Courtney’s life choices will ultimately become limited, but with greater public awareness of this condition, sufferers may not remain hidden behind a vacant stare.