Understanding Rett syndrome

Rett syndrome is a severe condition of the nervous system that affects physical movement and motor skills. It may cause speech problems (such as inability to learn to speak, or loss of speech), difficulty walking or loss of the ability to walk, and loss of purposeful hand use. Rett syndrome is caused by a change in the MECP2 gene that is thought to disrupt the normal function of neurons and other cells in the brain. In most cases, there is no family history of the condition and the genetic change arises randomly in one individual.  

Facts about Rett syndrome

  • Rett syndrome is found almost exclusively in females 

  • It has a prevalence of approximately one in 10,000 to one in 15,000 females between the ages of five and 18 years 

  • There are about 200 girls in Australia who have been diagnosed with this condition 

  • Babies develop normally until six to 18 months; then they stop acquiring new skills and lose existing ones. 

Symptoms of Rett Syndrome 

  • a period of regression during the first five years of life, followed by recovery or stabilisation 

  • partial or complete loss of purposeful hand skills (such as grasping, holding or self-feeding)  

  • partial or complete loss of language skills (speech) 

  • walking (gait) abnormalities, such as an unsteady walk or an inability to walk  

  • repetitive hand movements such as hand wringing or hand squeezing, clapping or tapping, mouthing and hand washing or hand rubbing movements. 

How can CPL help?

No matter where you are on your journey, we are ready to help you achieve your goals. Our services aim to support people to reach their full potential through:  

For more information about how we can support you with Rett syndrome, visit our services page, call us on 1800 275 753 or send an online enquiry