Rett Syndrome Association of Australia | What is the outlook for persons with Rett syndrome?

What is the outlook for persons with Rett syndrome?


The outlook for Rett syndrome individuals is not all doom and gloom. Even though the condition is such that most will need lots of help to get through each day, some independent skills associated with eating, drinking, toileting and/or dressing, can be learnt. Communication is particularly important as there is strong desire on their part to interact with those around them, despite their lack of expressive language and impaired hand use. This desire is evident by their eye gaze, facial expressions, and/or body gestures.

Females with Rett syndrome have greater receptive language (i.e., what they hear and understand) than expressive language (speech). It is important for them that the activity and/or content of a conversation involves something that they find very stimulating. Communication methods vary considerably among the Rett syndrome population. Methods can include one or more of the following, eye pointing and blinking, use of yes/no, flash cards, pictures, switches, facilitation, communication boards, head pointers, voice output devices, computers (with touch windows, Intellikeys keyboard, switch activated mouse or eye gaze technology such as Tobii), and more recently, the Ipad. Abilities can also be influenced by such things as the extent of hand use, degree of mobility and/or stiffness, state of posture, level of intelligence and the listener’s appreciation of communication techniques to use, to name just a few.

Despite their difficulties, persons with Rett syndrome can continue to learn and enjoy family and friends, well into middle age and beyond. Survival data for the disorder has to be treated with caution as statistics on those affected by the condition and the number who die, do not include all such cases from around the world. The Australian Rett Syndrome Study has reported that 98% of Australian Rett syndrome girls born from 1976 onwards, would still be alive at 10 years of age and 75% at 25 years. Life expectancy data concerning an American Rett syndrome population was presented at the 7th World Congress on Rett Syndrome in New Orleans in June 2012 and stated that the odds of living for 10 years was the same as that of the general population of the United States living for 10 years. As for longer terms of survival, it was calculated that 90% of their Rett syndrome population would still be alive at age 20, 75% at age 30, 65% at age 40, and 50% at age 50 years.