What is the life expectancy of a child diagnosed with Gorlin Chaudhry Moss Syndrome?

Question

I have a niece with this syndrome and can't seem to find any real information when I google it.

Answer 1

Except in very rare and extreme cases, the lifespan of a child with Gorlin Chaudhry Moss Syndrome (or Ectodermal Dysplasias) is not affected by the disease.

http://www.nfed.org/FAQ.htm#Lifespan

General Discussion

Gorlin-Chaudhry-Moss syndrome is an extremely rare inherited disorder characterized by premature closure of the fibrous joints (sutures) between certain bones in the skull (craniosynostosis), unusually small eyes (microphthalmia), absence of some teeth (hypodontia), and/or excessive amounts of hair (hypertrichosis) on most areas of the body. Affected individuals may also exhibit a mild delay in physical development (growth retardation); short fingers and/or toes; and/or underdevelopment (hypoplasia) of the two long folds of skin on either side of the vaginal opening (labia majora) in females. In addition, there may be an abnormal opening between the two large blood vessels that carry blood away from the heart (pulmonary artery and aorta), causing inappropriate recirculation of some blood through the lungs, rather than throughout the rest of the body (patent ductus arteriosus). In some cases, mild mental retardation may also be present. It is believed that Gorlin-Chaudhry-Moss syndrome may be inherited as an autosomal recessive trait.




https://www.mylifepath.com/hw/articles/hw_article.jsp;jsessionid=Q5ZMTDXI3JIGDJP3YYRCGN3F5XDCKITT?articleId=HWNORD1041&fromTopics=all_topics

Answer 2

Never found anything on the Yahoo search either. It must be pretty rare.

Gorlin-Chaudhry-Moss syndrome is an extremely rare inherited disorder characterized by premature closure of the fibrous joints (sutures) between certain bones in the skull (craniosynostosis), unusually small eyes (microphthalmia), absence of some teeth (hypodontia), and/or excessive amounts of hair (hypertrichosis) on most areas of the body. Affected individuals may also exhibit a mild delay in physical development (growth retardation); short fingers and/or toes; and/or underdevelopment (hypoplasia) of the two long folds of skin on either side of the vaginal opening (labia majora) in females. In addition, there may be an abnormal opening between the two large blood vessels that carry blood away from the heart (pulmonary artery and aorta), causing inappropriate recirculation of some blood through the lungs, rather than throughout the rest of the body (patent ductus arteriosus). In some cases, mild mental retardation may also be present. It is believed that Gorlin-Chaudhry-Moss syndrome may be inherited as an autosomal recessive trait.
.

Answer 3

seems to be good.
check this out
http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=233500



GORLIN-CHAUDHRY-MOSS SYNDROME, CRANIOFACIAL DYSOSTOSIS, HYPERTRICHOSIS, HYPOPLASIA OF LABIA 233500 Conductive hearing loss, hypertrichosis, coarse hair and low frontal hairline. Two sisters and 2 other female patients described

Answer 4

ich weiss nicht, es tut mir leid

Answer 5

i don't know i'm only a young person