A 24-year old nursing student discovered that she suffers from a rare disorder called Kleine-Levin Syndrome only after her friends saw a documentary about it.
Poppy Shingleton is a student at Southampton University and developed this rare disorder at the age of 18. This condition has caused her to miss several weeks of school and this was the reason why she had to re-sit her A-levels. When she first experienced an episode, she thought that her drink had been tampered with. After a visit to the hospital, she was sent home as it was too late for them to run toxicology tests.
Three weeks later, she experienced another episode, and did not wake up for a week. She was referred to a neurologist and doctors carried out various tests including brain scans and a muscle biopsy. She was misdiagnosed by one specialist as being depressed and suffering from chronic fatigue.
The information provided to her by her friends prompted her to contact the Kleine-Levin Syndrome Foundation. She was referred to specialists at Chelsea and Westminster Hospital where she was finally diagnosed with the condition.
Sufferers of the disorder have to be woken to eat and use the toilet. Experts are not sure what causes this disorder and there is no known cure. It is controlled by stimulant drugs for the individual to stay awake, and sleeping pills to aid a better quality of sleep. It is said that most people will grow out of the disorder as they reach adulthood.
Poppy Shingleton hopes that she will grow out of it as this condition makes her feel ‘totally detached and spaced out’. She explains the feeling as ‘watching herself’. She finishes university in September and has started to apply for jobs as she is determined to live a normal life.