Living With Rett Syndrome

Rett syndrome is a neurological condition that predominantly affects girls. It is caused by mutations in the MECP2 gene, which contains the information necessary for the production of a protein called MECP2 that is important for normal brain function. This protein controls when other genes will be turned on or off, and is essential for proper working of nerve cells and other brain cells.

An estimated 1 in every 9,000 or 10,000 female babies are affected by Rett syndrome. Limited information is available regarding life expectancy due to the rarity of the condition. Almost all Rett patients reach at least age 10, and there are reports of some living well into their 40s and 50s. Early diagnosis and treatment can help with both the length of a patient’s life and its quality.

The classic form of this disease is the most common and often evident in infancy.

Although children with Rett syndrome can have a wide variety of symptoms, the most common include speech, learning, and coordination difficulties. The loss of motor skills, particularly, are impactful. Being informed about the different resources and aids available can help patients and their caregivers better manage this rare disorder.


Gastrointestinal problems in Rett’s patients can influence their eating habits and lead to inadequate nutrition. It is therefore vital that a proper diet plan is followed in consultation with dietitians. A well-balanced diet plan should be designed to promote healthy weight gain and maintain a proper body mass index, or BMI. Adequate amounts of calcium, vitamin D, fibers and fluids must be included in the diet to support bone health and regulate bowel movements. The proper feeding method must also be evaluated.


Identifying the right school that can accommodate a child with Rett syndrome is crucial. Based on the child’s capabilities and needs, parents can select from multiple schooling programs available. It is essential to identify a learning structure that is best suited to helping the child learn. Factors that trigger anxiety, and put stress on the child’s motor skills, mobility status, and learning capabilities, must be considered in making the decision. Most schools adapt their classrooms and teaching styles to accommodate children with neurological disorders such as Rett syndrome.


Rett syndrome is a progressive condition, meaning its symptoms worsen over time. Building muscle strength through exercise can help maintain existing motor skills and slow deterioration. Exercise should always be performed in consultation with physiotherapists. A trained specialist can help design an exercise program for patients in different stages of Rett syndrome. Physical activity can help to improve cognitive function and work toward greater independence. Group workout sessions also provide a setting for social activity. Overall, exercise helps patients to maintain a range of motion, making it easier for them to take part in daily life activities, and increases mobility.

Assistive aids

Assistive devices can help in daily activities such as bathing, drinking, and dressing, allowing patients be more independent and so have greater confidence. Simple adjustments in the house, such as grab bars, safety rails, and bathing chairs, can also immensely improve a patient’s quality of life. Small changes, such as including zipper or button aids and dressing sticks, can help patients get dressed on their own.

Braces and splints can also be used to support weak joints and provide additional support. In some instances, wheelchairs and other mobility-assisting devices, such as strollers, walkers, or carts, may be necessary for mobility.

Communicating can be difficult for Rett’s patients. Augmentative and alternative communication (AAC) methods and aids, such as the use of visual aids, communication boards, computers, voice output devices, and other apps, can be effective in expanding their ability to communicate thoughts and needs.

Other resources

Additional information, resources, and access to support groups are available through


Rett Syndrome News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.