The congenital central hypoventilation syndrome (CCHS), also known as the Ondine syndrome, is
a very rare genetic disorder. In contrast with healthy people, patients do not increase
breathing in response to an excess of carbon dioxide (CO2). As a consequence, they do not
breath sufficiently, or even stop breathing, during sleep. Their survival depends only on
mechanical respiratory assistance, all life long.
We have recently published two cases of recovery of a response to CO2 in patients taking
desogestrel as a contraceptive pill. The goal of the study is therefore to assess the
hypothesis that desogestrel will restore a respiratory response to CO2 in CCHS patients and
allow them to breath sufficiently during sleep without mechanical assistance.