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Craniosynostosis, Primary

Abstract

You are reading a NORD Rare Disease Report Abstract. NORD’s full collection of reports on over 1200 rare diseases is available to subscribers (click here for details). We are now also offering two full rare disease reports per day to visitors on our Web site.

NORD is very grateful to Robert F. Keating, MD, Professor and Chief, Department of Neurosurgery; President, Medical Staff, Children's National Medical Center, Washington, DC, for assistance in the preparation of this report.

Synonyms of Craniosynostosis, Primary

  • craniostenosis

Disorder Subdivisions

  • coronal synostosis
  • Kleeblattschadel deformity (cloverleaf skull)
  • lambdoid synostosis
  • metopic synostosis
  • sagittal synostosis

General Discussion

Primary craniosynostosis is a general term for the improper development of the bones of the skull, which can result in an abnormal head shape in affected individuals. Craniosynostosis refers to the premature fusion of the fibrous joints (sutures) between certain bones of the skull. The severity of primary craniosynostosis can vary from one person to another. Intelligence is usually unaffected. Primary craniosynostosis may occur as an isolated finding or as part of a syndrome. The main treatment for primary craniosynostosis is surgery, but not all affected children will require surgery. The exact cause of primary craniosynostosis is unknown, although the skull abnormalities result from the abnormal hardening (ossification) of the cranial sutures. Primary craniosynostosis is distinguished from secondary craniosynostosis, which occurs because of a primary failure in brain growth.

Organizations related to Craniosynostosis, Primary

Please note that some of these organizations mat provide information concerning certain conditions potentially associated with this disorder.

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