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What is the prevalence of Congenital Central Hypoventilation Syndrome?

How many people does Congenital Central Hypoventilation Syndrome affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Congenital Central Hypoventilation Syndrome

The prevalence of Congenital Central Hypoventilation Syndrome (CCHS) is estimated to be around 1 in 200,000 live births. This rare genetic disorder primarily affects the autonomic control of breathing, leading to inadequate ventilation during sleep or in certain situations. CCHS is often diagnosed in infancy or early childhood, but cases can vary in severity. While the condition is rare, it is crucial to raise awareness and provide appropriate medical support to individuals and families affected by CCHS.



Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic disorder that affects the control of breathing. It is estimated to occur in approximately 1 in every 200,000 live births, making it a relatively uncommon condition.


CCHS is characterized by a malfunction in the autonomic nervous system, specifically the failure to respond to low oxygen levels and high carbon dioxide levels in the blood. This results in inadequate breathing during sleep and, in some cases, during wakefulness as well.


The prevalence of CCHS may vary across different populations, but it is generally considered to be a rare disorder. The condition is often diagnosed in infancy or early childhood, although milder cases may go undiagnosed until later in life.


While CCHS is a rare condition, it is important to note that the impact on individuals and families affected by it can be significant. The management of CCHS typically involves lifelong respiratory support, such as the use of ventilators or diaphragmatic pacemakers, to ensure adequate breathing and prevent complications.


Early diagnosis and appropriate medical interventions are crucial in managing CCHS and improving the quality of life for those affected.


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World map of Congenital Central Hypoventilation Syndrome

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Stories of Congenital Central Hypoventilation Syndrome

CONGENITAL CENTRAL HYPOVENTILATION SYNDROME STORIES
Congenital Central Hypoventilation Syndrome stories
Congenital Central Hypoventilation Syndrome stories
i was born on Good Friday in April of 2000, 1 month early with a very low heart not being able to process a large amount of amniotic fluid.  I remained in the NICU for a little over 3 months.  My mutation number is 20/27.  I have multiple diagnosi...
Congenital Central Hypoventilation Syndrome stories
Hello there. In 2012, I got married to a man that was diagnosed at Birth with cchs. He also had a daughter that was diagnosed at Birth with cchs. I am both of their primary care person, outside of doctors of course. As of right now, I have 4 good nur...
Congenital Central Hypoventilation Syndrome stories
Son also has CCHS with associated Hirschsprungs.
Congenital Central Hypoventilation Syndrome stories
I was diagsnosed at 15 days old. I was sent to the hospital in Portland, Oregon. That's where I got my tracheostomy. I had my tracheostomy until I was 16. That's a pretty long time. But luckily I was able to get it out. However, it came with challeng...

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