Self-management

Coping and support

A number of support groups are available for people with Noonan syndrome and their families. Talk to your doctor about finding a support group in your area. Also ask about trustworthy resources on the internet that can direct you to local support groups and sources of information about Noonan syndrome.

Prevention

Because some cases of Noonan syndrome occur spontaneously, there's no known way to prevent it. However, if you have a family history of this syndrome, talk to your doctor about the benefits of genetic counseling before you have children. Noonan syndrome can be detected with molecular genetic testing.

If Noonan syndrome is detected early, it's possible that ongoing and comprehensive care may lessen some of its complications, such as heart disease.

Nov. 30, 2016
References
  1. Conboy E, et al. Paraspinal neurofibromas and hypertrophic neuropathy in Noonan syndrome with multiple lentigines. Journal of Medical Genetics. 2016;53:123.
  2. Rojnueangnit K, et al. High incidence of Noonan syndrome features including short stature and pulmonic stenosis in patients carrying NF1 missense mutations affecting p.Arg1809: Genotype-phenotype correlation. Human Mutation. 2015;36:1052.
  3. Rogol AD. Causes of short stature. http://www.uptodate.com/home. Accessed June 26, 2016.
  4. Roberts AE, et al. Noonan syndrome. The Lancet. 2013;381:333.
  5. National Library of Medicine. Noonan syndrome. Genetics Home Reference. https://ghr.nlm.nih.gov/condition/noonan-syndrome. Accessed June 26, 2016.
  6. Romano AA, et al. Noonan syndrome: Clinical features, diagnosis, and management guidelines. Pediatrics. 2010;126:745.
  7. Learning about Noonan syndrome. National Human Genome Research Institute. https://www.genome.gov/25521674/learning-about-noonan-syndrome/. Accessed June 26, 2016.
  8. Noonan syndrome. Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/gard/10955/noonan-syndrome/resources/1. Accessed June 26, 2016.
  9. Noonan syndrome. National Organization for Rare Disorders. http://rarediseases.org/rare-diseases/noonan-syndrome/. Accessed June 26, 2016.
  10. Babovic-Vuksanovic D (expert opinion). Mayo Clinic, Rochester, Minn. June 29, 2016.