Breathing can sometimes be abnormal from birth.
Explore some of the potential causes of Ondine’s curse and how it can be effectively treated.
What Is Ondine’s Curse?
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It is always congenital, meaning that it is present from birth.
Central sleep apnea is characterized by the brainstem failing to prompt normal breathing.
This becomes especially dangerous during sleep.
In medical terms, Ondine’s curse represents an extreme form of sleep apnea.
As such, it is considered to be an extremely rare condition.
A genetic mutation seems to be the underlying cause.
Though the condition usually occurs sporadically, there may be a genetic tendency that runs in families.
Relatives may have a milder form of dysfunction that affects the autonomic nervous system.
In about 10% of cases, other mutations at the same location are involved.
Parents who wish to have additional children after having a child with CCHS are encouraged to seek genetic counseling.
Symptoms may appear in milder cases with the use of anesthesia or sedatives.
The ventilator ensures normal breathing whenever the person goes to sleep, even during naps.
If this were not used, someone with CCHS could die anytime they fall asleep.
Guidance from respiratory therapists, including possible at-home assistance, can ease this adjustment.
It may also be possible to web connection with other affected families who are managing the condition.
This social support may be helpful for many reasons.
2003;123A(3):267-78. doi:10.1002/ajmg.a.20527
