What is CdLS?

Cornelia de Lange Syndrome (CdLS) is a rare syndrome with no known cause (UPDATE 6/04: The CdLS Gene has been identified. See link below) Individuals with CdLS often strongly resemble each other and share many common characteristics such as small stature, small hands and feet, eyebrows that meet mid-line, long eyelashes, short upturned nose, and thin downturned lips. Limb anomolies, usually with the fingers, hands or forearms, are also found. The most common medical difficulties are gastroesophageal reflux, feeding and digestive problems, seizures, cleft palate and heart defects. The majority experience developmental delays; the most significant delay being speech. Behavioral issues can also arise (sometimes caused by pain or illness). For more information about CdLS, please visit the CdLS Foundation web site.



BREAKING NEWS: The CdLS Gene Identified


Support

Because it is such a rare syndrome it is often difficult to find local families or support groups. The internet offers a wonderful opportunity for families to connect! If you have a person with CdLS in your life and would like to communicate with other CdLS families, please visit the CdLS Online Support Group web site.