CCHS is short for Congenital Central Hypoventilation Syndrome. It’s a genetic condition affecting the automatic control of breathing. For most of us breathing happens automatically – however in CCHS, the normal safeguards used by the nervous system to control breathing don’t work.
People with CCHS do not respond to increased carbon dioxide levels that would trigger a healthy person to draw a breath, which means breathing can and does stop. Most CCHS people mainly experience symptoms when asleep, but some can also stop breathing or under-breathe when awake.
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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.
