Sunday, March 4, 2012

Ondine's Curse - Rare form of sleep apenea

So I happened upon this Wikipedia article about Ondine's Curse, also called congenital central hypoventilation syndrome (CCHS) which is a respiratory disorder that is fatal if untreated due to the person with he curse having a respiratory arrest while sleeping.  This is a central sleep apnea which is congenital by nature but can occur from a head injury, this can occur in 1 in 200,000 people born so it is quite rare, according the information in 2006 there were only 200 known cases at the time in the USA.  What I overall understand about OnDine's Curse is that basically you body loses the involuntary ability to breathe so you only can breathe when conscious and most people to survive get a tracheotomy and use a ventilator at night to breathe.

Here is a article about a girl who has this issue, it's interesting.

As respiratory therapist I figured this would be something interesting to find out about and just have a background knowledge of to make us better in our jobs even though the odds are against us at dealing with a patient with Odine's Curse, but it's always better to learn something new.


Josh said...

If you need to know any more about CCHS please feel free to ask me. I am the father of an amazing 2 1/2 year old girl with CCHS. She is mask ventilated at night and during naps.

I love to see RTs becoming familiar with this condition!


Douglas Kohn said...

This I just happened to come across on and found it interesting and relevant to my profession. Yes it's definitely something to be aware of. Josh if you would like to write a follow up about your care for your daughter and anything that could help us RTs to province better care for people with CCHS that would be great.

shelley colquitt said...

My daughter also has this she is 11 with breathing pacemakers. It makes me so happy that you are looking into this disease

Melinda said...

My son is almost 3 now and also has CCHS. He is currently ventilated with a trach and a ventilator. Please see the CCHS Network website for articles and information or email me for more information


Juhee Dewan said...

I am currently a respiratory therapy student and I found this to be very interesting. My dad actually has sleep apnea so anything related always sparks my interest. Thanks for sharing!

Anonymous said...

Hi, Im an engineer working with ventilators. One of my customers has CCHS, the condition in which his brain "forgets" to breathe when he's asleep. He has my homecare ventilator from puritan bennett.

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