Treatment and Prognosis
Patients generally require tracheotomies and lifetime mechanical ventilation on a ventilator in order to survive. However, it has now been shown that Biphasic Cuirass Ventilation can effectively be used without the need for a tracheotomy. Other potential treatments for Ondine's curse include oxygen therapy and medicine for stimulating the respiratory system. Currently problems arise with the extended use of ventilators including fatal infections and pneumonia
Most people with Ondine's curse do not survive infancy, unless they receive ventilatory assistance during sleep. An alternative to a mechanical ventilator is Phrenic Nerve Pacing/diaphragm pacing.
Although rare, cases of long-term untreated CCHS have been reported.
Read more about this topic: Ondine's Curse
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