Cornelia de Lange syndrome

Living with

When am I going to die from Cornelia de Lange syndrome?

Unless an individual with Cornelia de Lange syndrome has major medical problems present at birth such as a serious congenital diaphragmatic hernia or a complex heart defect, individuals with Cornelia de Lange syndrome can live well into adulthood. Life expectancy in Cornelia de Lange syndrome is largely dependent on the level of medical care an individual receives as well as their general health. As is true for many individuals with developmental disabilities, people with Cornelia de Lange syndrome are more likely to be injured in accidents and are more vulnerable to common illnesses even if they are generally healthy. Therefore, the life expectancy of an individual with Cornelia de Lange syndrome may be shorter than the general population by approximately 10-20 years.

Jackson L, Kline AD, Barr MA, Koch S. de Lange syndrome: a clinical review of 310 individuals. American Journal of Medical Genetics. 1993; 47:940-946.

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