How Long Can You Live With Apert Syndrome?


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Julii Brainard answered
Apert syndrome is also called craniosynostosis. It appears in about 1/2000 live births, and is a serious deformity of the skull and other bones.

With Apert syndrome, some or all of the bones of the skull fuse prematurely. This can lead to severe facial deformities, which are bad enough on their own, but if left untreated brain growth is severely limited in affected individuals. This usually led to to severe mental retardation and shortened lifespan.

Unfortunately the alternatives are not great; the only way to treat Apert syndrome is via many operations on the skull and face while a person is growing up. These are inevitably painful to undergo and recover from each time.

Apert syndrome is a genetic defect, and often (but not always!) one of the parents will be slightly affected.

Fusions in toes and fingers are also common in this condition -- see example right: .

Until relatively recently people born with Apert syndrome had very abbreviated lifespans (usually not reaching adulthood); the medical technology didn't exist to treat them early enough. Nowadays the prognosis varies widely and depends very much of the severity of the individual case, and how it has been treated (and from how young). Nevertheless, with good quality medical treatment most people with Apert Syndrome should be able to live into their 50s and 60s if not beyond.

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