What is Ondine's Curse?

Ondine's or Undine's curse is a very rare medical condition characterized by respiratory arrest during sleep. This rare form of apnea may require a patient to be on a ventilator to ensure that the patient is able to breathe while sleeping. Many cases are congenital, with symptoms emerging shortly after birth, although the condition can also be acquired as a result of severe trauma to the brain, as seen in traumatic brain injuries, strokes, and some types of brain tumors.

In addition to suffering apnea, many patients experience symptoms related to other autonomic nervous system functions. They often have difficulty swallowing, for example, and can be susceptible to brain tumors as well. One problem with Ondine's curse is that it is so rare that a doctor may not recognize it immediately, which can result in delays in care.

This condition is also known as primary alveolar hypoventilation or congenital central hypoventilation syndrome (CCHS). Ondine's curse cannot be cured, but it can be managed and treated. Ventilation will help the patient to breathe, and patients may also benefit from physical therapy and other supportive care which is designed to promote independence. Unfortunately, many infants with Ondine's curse die, because the symptoms are not recognized by their doctors in time.


The best care for patients with Ondine's curse is often available in urban areas where medical care tends to be more advanced because of the larger population. Specialists who have worked with patients who have this condition are more likely to practice in such regions, and such regions also provide people with access to the latest medical technologies and treatments. Supportive care for patients may also be more readily available in such regions, ranging from expert physical therapy to programs which are intended to help people with disabilities maintain their independence.

The name of this medical condition is a reference to a Greek myth. According to legend, the water nymph Ondine cursed a man who promised that every waking breath he took would be a testament to his love, and then cheated on her. She condemned him to stop breathing while he slept, and while he tried to stay awake to avoid the curse, eventually he became fatigued, fell asleep, and died. In Greek mythology, many nymphs are rather vicious when it comes to vengeance, and numerous examples of vengeance similar to Ondine's curse can be found in Greek legends and stories.


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Post 5

I have absolutely no breathing problems and no problems sleeping. My problem is that even the covers cause pain if they touch my right foot, ankle. Both ankle bones hurt. When I get up and walk the pain eases. Breathing is not a consideration?

Post 4

My son has CCHS (Ondine's Curse). He has a trach and a ventilator. CCHS is caused by a mutation of the PHOX2B gene. We do not like the term "curse" because we feel our son is a blessing, not a curse. My son is now almost three and is like any other active little boy. --Melinda G. Birmingham, Alabama

Post 3

@feruze-- Oh no, we always refer it to as "Congenital Central Hypoventilation Syndrome" at the hospital. I agree with you that a child might take "Ondine's curse" wrongly and believe that he or she was cursed somehow. That's just the more common name but it's not really used so much in the medical field.

As far as I know, scientists and doctors have not figured out the cause of it. The little girl's parents that I mentioned were actually distant relatives. But I have no idea whether that had anything to do with it or not.

It is a difficult condition to live with. Can you imagine how it would be if your body just forgot to breathe? The other bad part is that it can cause other problems like mild retardation, learning disabilities, speech problems and so forth because the child is not getting enough oxygen to the brain.

Post 2

@ysmina-- It must be really hard to look at babies with such health problems. But you and everyone else there makes a huge difference in their lives!

This does sound like a very scary disorder. I have mild sleep apnea and sometimes wake up completely out of air at night. I know that feeling and I'm sure I would die in my sleep if I don't jerk out of it and get some air.

Do we know what causes Ondine's curse? Is it genetic factors?

Looking at the meaning behind the name of the disorder, it sounds like it has been around for a very long time. I just hope no one tells a little boy or girl that they have "Ondine's curse." I'm sure that wouldn't be very beneficial for his or her psychology.

Post 1

I'm a nurse and I work at a newborn intensive care unit. We had a little girl who had ventilation problems from birth who was diagnised with Ondine's curse at our NICU. She remained in the hospital for a very long time and then was finally discharged. Her parents had a ventilator set up at home so that she wouldn't have breathing problems at night.

This was the only case of Ondine's curse I came across while working. It's a very debilitating condition and since it's congenital, treatment is usually necessary from birth.

There is however a new hope with people who have this condition. Doctors can now implant a pacemaker in the diaphragm that makes the person

breathe. I believe several people have had this surgery already in the US with successful results. I hope this procedure becomes more widespread so that all Ondine's curse patients can have it. It will improve their quality of life greatly.

I know it will make life much easier for little girls and boys that are dealing with this.

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