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What is Craniosynostosis?
Craniosynostosis is a birth defect of the brain characterized by the premature
closure of one or more of the fibrous joints between the bones of the skull
(called the cranial sutures) before brain growth is complete. Closure
of a single suture is most common. The abnormally shaped skull that results is
due to the brain not being able to grow in its natural shape because of the
closure. Instead it compensates with growth in areas of the skull where the
cranial sutures have not yet closed. The condition can be gene-linked, or caused
by metabolic diseases, such as rickets or an overactive thyroid. Some cases are
associated with other disorders such as microcephaly (abnormally small
head) and hydrocephalus (excessive accumulation of cerebrospinal fluid
in the brain). The first sign of craniosynostosis is an abnormally shaped skull.
Other features can include signs of increased intracranial pressure,
developmental delays, or mental retardation, which are caused by constriction of
the growing brain. Seizures and blindness may also occur.
Is there any treatment?
Treatment for craniosynostosis generally consists of surgery to relieve pressure
on the brain and the cranial nerves. For some children with less severe
problems, cranial molds can reshape the skull to accommodate brain growth and
improve the appearance of the head.
What is the prognosis?
The prognosis for craniosynostosis varies depending on whether single or
multiple cranial sutures are involved or other abnormalities are present. The
prognosis is better for those with single suture involvement and no associated
abnormalities.
What research is being done?
The NINDS conducts and supports a wide range of studies that explore the complex
mechanisms of early neurological development. The knowledge gained from these
fundamental studies provides the foundation for understanding how this process
can go awry and offers hope for new ways to treat and prevent brain birth
defects, including craniosynostosis.
Organizations
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com/
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org/
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
The Arc of the United States
1010 Wayne Avenue Suite 650
Silver Spring, MD 20910
Info@thearc.org
http://www.thearc.org/
Tel: 301-565-3842
Fax: 301-565-3843 or -5342
Source: National Institutes of Health; National Institute of
Neurological Disorders and Stroke
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