Get The Newsletter Of The Cornelia De Lange Syndrome (CdLS) USA Foundation, Inc

Dr. Goodban found that children with CdLS have the ability to understand language much more than the ability to produce language. Even children with highly developed vocabularies talk very little. Oftentimes, children have higher cognitive abilities than their language skills demonstrate.

A person with CdLS can live a normal lifespan. However, if medical problems such as recurrent pneumonia, intestinal issues or congenital heart defects are not identified and properly treated, they may result in a shortened lifespan.

Frequency. Although the exact incidence is unknown, Cornelia de Lange syndrome likely affects 1 in 10,000 to 30,000 newborns. The condition is probably underdiagnosed because affected individuals with mild or uncommon features may never be recognized as having Cornelia de Lange syndrome.

The vast majority of cases (99%) are sporadic, with rare familial occurrences having been reported. Most individuals with CdLS do not reproduce as a result of the severity of the disorder.

CdLS is characterized by autistic features, notably excessive repetitive behaviors and expressive language deficits. The prevalence of autism spectrum disorder (ASD) symptomatology is comparatively high in CdLS.

Outlook and follow-up care for Cornelia de Lange syndrome A person with CdLS can live a normal lifespan. However, if medical problems such as recurrent pneumonia, intestinal issues or congenital heart defects are not identified and properly treated, they may result in a shortened lifespan.

Cornelia de Lange Syndrome Prognosis. While there is no cure, most children who are diagnosed with Cornelia de Lange syndrome live a normal lifespan. Since most have an intellectual disability to some degree, though, it's common that your child will need support and supervision throughout their adulthood.

Individuals with CdLS have autistic features characterized by repetitive behaviors, self-injurious behaviors, and deficits in communicative abilities, with less impact on social deficits. Common associated behavioral manifestations in individuals with CdLS include hyperactivity, anxiety symptoms, and sleep problems.