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Genetic and Rare Diseases Information Center (GARD)

Other Names for this Disease
  • Female Pseudo-Turner Syndrome
  • Male Turner Syndrome
  • Noonan-Ehmke syndrome
  • Pseudo-Ullrich-Turner syndrome
  • Ullrich-Noonan syndrome
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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 individuals with Noonan syndrome?

We are not aware of any studies in the available literature providing information about the average life expectancy in affected individuals. There is a wide range in the nature and severity of signs and symptoms that may be present in individuals with Noonan syndrome, so the long-term outlook (prognosis) and life expectancy differs among affected individuals. Systematic studies on the health of adults with Noonan syndrome are rare.[1] Studies generally suggest that long-term outcome depends largely on the presence and severity of congenital heart defects. Death in affected individuals has been frequently associated with the presence of complex left ventricular disease.[1] Studies have indicated that individuals with Noonan syndrome have a 3-fold higher mortality rate than those in the general population.[2][3]

Some individuals with Noonan syndrome have ongoing health problems due to the congenital heart defects, lymphatic vessel dysplasia, urinary tract malformations, blood disorders, or other abnormalities associated with the condition.[2][3] However, with special care and counseling, the majority of children with Noonan syndrome grow up and function normally in the adult world. Signs and symptoms tend to lessen with age, and "new" medical problems are generally not expected to appear in adulthood.[2]
Last updated: 10/2/2013

  • 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: Accessed 10/1/2013.
  • Roberts AE, Allanson JE, Tartaglia M, Gelb BD. Noonan syndrome. Lancet. January 26, 2013; 381(9863):333-342.