This genetic disorder is so rare, there is little knowledge or emotional support for families with children that have this disorder. The expense to support a child with CCHS is enormous and the physical and emotional demands of care for a child with CCHS can be overwhelming to a family.
We are here to be with you as you manage this difficult condition with your child.
Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic disorder of the autonomic nervous system and it affects how the brain controls breathing. Normally, the brain determines how fast and how deep we should breathe. In CCHS, this part of the brain's function is abnormal.
Children with CCHS severely under-breathe when they are asleep, but breathing is not normal when they are awake either. There is no cure for CCHS, and it lasts ones entire life. There are no medicines which will correct the under-breathing problem. Therefore, these children require ventilator assistance (life support equipment) for life.
Because CCHS is so rare, it frequently takes some time before the correct diagnosis is made. However, once the diagnosis of CCHS is made, children will use a positive pressure ventilator via tracheostomy. Most CCHS patients require assisted ventilation only when they sleep. However, approximately 25%-35% of CCHS patients require assisted ventilation at all times, both while awake and while asleep.
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