When sleep is deadly

Imagine having to have someone watch you sleep to stop you from dying. Not just for one night when you’re unwell, but for the whole of your life. That’s the reality for over 100 people in the UK with the rare condition CCHS.

What is CCHS?

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. 

Keep up to date on the latest

Our blog combines the latest news from various sources on the fight against  CCHS.

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.