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Genetic and Rare Diseases Information Center (GARD)

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Noonan syndrome

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Other Names for this Disease
  • Female Pseudo-Turner Syndrome
  • Male Turner Syndrome
  • Noonan-Ehmke syndrome
  • Pseudo-Ullrich-Turner syndrome
  • Ullrich-Noonan syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

Where can I find information about life expectancy for Noonan Syndrome?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is the long-term outlook for people with Noonan syndrome?

There is a wide range in the nature and severity of signs and symptoms that may be present in people with Noonan syndrome, so the long-term outlook (prognosis) and life expectancy may differ among affected people. Studies generally suggest that long-term outcome depends largely on the presence and severity of congenital heart defects. Death in affected people has been frequently associated with the presence of complex left ventricular disease.[1] Studies have indicated that people with Noonan syndrome have a 3-fold higher mortality rate than those in the general population.[2][3]

Some affected people have ongoing health problems due to congenital heart defects, lymphatic vessel dysplasia, urinary tract malformations, blood disorders, or other associated health issues.[2][3] However, with special care and counseling, the majority of children with Noonan syndrome grow up and function normally as adults. Signs and symptoms tend to lessen with age, and new medical problems associated with the condition are generally not expected to appear in adulthood.[2]
Last updated: 6/2/2015

References
  • Binder G. et al. Health and quality of life in adults with Noonan syndrome. J. Pediatr. September 2012; 161(3):501-505.
  • Ineke van der Burgt. Noonan Syndrome. Orphanet Journal of Rare Diseases. 2007; 2:4:http://www.ojrd.com/content/2/1/4. Accessed 10/1/2013.
  • Roberts AE, Allanson JE, Tartaglia M, Gelb BD. Noonan syndrome. Lancet. January 26, 2013; 381(9863):333-342.
Other Names for this Disease
  • Female Pseudo-Turner Syndrome
  • Male Turner Syndrome
  • Noonan-Ehmke syndrome
  • Pseudo-Ullrich-Turner syndrome
  • Ullrich-Noonan syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.