Home > Diagnoses & Conditions > Rett Syndrome > FAQ

Rett Syndrome - FAQ

From Parents/Families

What is my child's life expectancy?

Most girls with RS live normal lifespans, although there is a small percentage who die unexpectedly of unknown causes. In one recent study in China, girls with RS had a 100% survival rate at 10 years of age and 87.5% at 25 years of age. [Wong: 2007] Etiologies that have been implicated include heart rhythm abnormalities and seizures; there does not appear to be any single cause however. [Kerr: 1999] The IRSA has recommended yearly EKG screening for heart rhythm abnormalities and seizures, if present or suspected, should be discussed with your Medical Home provider.

Authors

Author: Lynne M Kerr MD, PhD, 6/2008
Reviewing Author: Karin Dent MS, CGC, 6/2007
Content Last Updated: 6/2008

Page Bibliography

Kerr AM, Julu PO.
Recent insights into hyperventilation from the study of Rett syndrome.
Arch Dis Child. 1999;80(4):384-7. PubMed abstract / Full Text

Wong VC, Li SY.
Rett syndrome: prevalence among Chinese and a comparison of MECP2 mutations of classic Rett syndrome with other neurodevelopmental disorders.
J Child Neurol. 2007;22(12):1397-400. PubMed abstract