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CCHS UK, PO Box 713, Staines-Upon-Thames, TW18 9JN

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It is possible that some cases of sudden unexplained infant death may in fact have been caused by CCHS.

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Congenital Central Hypoventilation Syndrome (CCHS) Explained

CCHS is an extremely rare genetic condition which causes sufferers to lose their control of the most basic living function. Breathing. This is always the case when asleep but for some sufferers when awake too. It is caused by mutations in the PHOX2B gene and currently requires lifelong artificial ventilation as life support.