Rett Syndrome and Prognosis: Facts and Tips

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Rett syndrome is a genetic condition mainly seen in girls. It is characterized by normal development in the first few weeks of life followed by regression. People with Retts often are not able to be independent or mobile. They may need special assistive technology to communicate. This article describes the lives of people with Rett Syndrome and prognosis of the disease. It focuses on the final stage of Retts which starts at around 10 years of age. It also includes information about interventions that can prolong the life of people with Retts syndrome.

Prognosis of Retts Syndrome in Boys

Retts syndrome is usually not seen in boys. Research has shown that the cause for this is the genetic makeup of males. Thus, they say that boys with Retts die soon after birth, and do not survive long enough to show features of Retts syndrome.

Prognosis of Retts Syndrome in Girls

In girls, the prognosis of Retts depends largely on the severity of the disease. Girls with mild Retts syndrome are able be functional, however most girls with Retts require assistance. The exact life expectancy of Retts has not been found yet, as research in Retts has recently begun. However, there are some women with Retts in their 40s.

Retts Syndrome Life After 10 Years of Age:

Retts syndrome is a condition where there is a slow regression of skills and abilities between 6 months and 10 years of age. By 10 years, the disease sets in completely. Here are the characteristics of the life of a person with Rett’s after 10 years of age.

Mobility: By 10 years of age, a lot of people stop walking. Mobility skills may slowly regress over the years. A lot of additional difficulties in muscle tone and posture are seen that interfere with mobility. Regular physiotherapy and good positioning can help a person with Rett’s to maintain physical abilities for a longer time.

Social: Verbal communication is usually not present at this stage. However eye contact is preserved. Many people with Rett’s are able to communicate their needs through eye contact. Assistve communication can also be used.

Self Care: People with Rett’s usually need a lot of support to do their self care tasks. They may not be able to control their body movements in order to do tasks on their own.

Prolonging the Life Span of People with Retts:

Some simple ideas to help prolong the life span of people with Retts:

  • Be regular with doctor’s appointments and medications, especially seizure medication
  • Be regular with physiotherapy. If a person with Retts can walk, they must walk regularly to maintain their physical abilities.
  • Focus on good positioning. Good positioning is very important when a person has any abnormality in muscle tone. Good positioning will help to prevent deformities and preserve physical abilities.
  • Prevent pressure sores. Since a person with Retts syndrome may not be able to communicate, they may develop pressure sores. These can cause serious infections which can even lead to death.
  • Prevent depression. Even though it cannot be proven, people with Retts too , experience feelings and can experience depression. It is very important that people with Retts are included into family life and are given opportunities for social interaction and leisure.
  • Prevent respiratory infections with proper positioning and good medical monitoring.

Hope this information on Rett syndrome and prognosis was helpful to you. Continue reading at Bright Hub for more resources on Rett Syndrome.


Bettina E Bernstein,2010, Rett’s Syndrome, E-medicine, Available here

April Scrugggs, Rett Syndrome: Characteristics, Causes, and Treatment, Available here

This post is part of the series: A Guide to Rett Syndrome

In this guide to Rett syndrome, Bright Hub has compiled a series of articles detailing the symptoms and causes of Rett’s syndrome, along with strategies for adults and children living with it.

  1. 7 Interesting Facts about Rett Syndrome
  2. What is Rett Syndrome?
  3. Helping Children with Rett Syndrome
  4. Occupational Therapy Interventions for Rett Syndrome
  5. What is the Prognosis for People with Rett Syndrome?