A 17-year-old teen in London is facing what might be the biggest sleep-related problem in the world. Apparently, this boy suffers from Ondine’s curse, a potentially deadly disorder that attacks when he falls asleep.
But thank heavens for his life support machine, Liam Derbyshire can take a good night’s rest without worrying about dying.
It is indeed a huge trouble when your health condition is restricting you to doze off after a busy and tiring day. But Liam has lived with this burden for a long while now. Suffering from a rare disease called Congenital Central Hypoventilation Syndrome, the boy cannot breathe when he loses consciousness. Doctors say he could die when he falls asleep.
Also known as Ondine’s Curse, CCHS is a life-threatening disorder that causes inadequate gas exchange (hypoventilation) during sleep. It is dubbed after the curse from a German folk epic where a nymph was doomed to forget to breathe if she falls asleep. Though the patient does not really “forget” breathing in CCHS, the literary misnomer Ondine’s curse seems to represent the disorder well.
More About Congenital Central Hypoventilation Syndrome
CCHS is a lifelong and incurable disease affecting the central and autonomic nervous systems, which both take control over our body’s involuntary functions. Some of which is the heart rate, blood pressure, sensing of oxygen and carbon dioxide blood levels, and temperature.
When these human biological systems fail in CCHS, the body would not be able to identify the presence of a huge concentration of carbon dioxide in the blood (hypercapnia). If this continues, respiratory acidosis might occur, which may progress to death. And this is what Liam has to defy in order to live.
How Liam Battles Ondine’s Curse
With a machine powered by the latest technology that assists his breathing while sleeping, the Brit teen can, fortunately, continue living. Every night, his parents hook him up to a life support machine that’s embedded with plates that force his lungs to exhale. Liam, however, is never left alone even if he sleeps comfortably in his electric bed.
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