What is Rett syndrome?
Rett syndrome is a rare genetic disorder that occurs predominantly in girls and usually becomes apparent in the first year of life. After an initial apparently normal development, the affected children gradually lose acquired skills such as speech, hand use and motor skills. Typical characteristics are abnormal, stereotypical hand movements (e.g. hand wringing or rubbing), motor development delays, balance disorders and epileptic seizures.
In addition, breathing problems, sleep disorders, speech and swallowing difficulties and changes in the cardiovascular system can occur. Many children need support with mobility, communication and everyday life. Special aids such as wheelchairs, communication devices or adaptations for everyday life can significantly improve quality of life.
Aids that are frequently used for Rett syndrome:
Aids and support for everyday life
As girls with Rett syndrome are often dependent on extensive help as the condition progresses, choosing the right aids plays a key role in their quality of life:
- Augmentative and Alternative Communication (AAC): as targeted use of the hands is difficult, eye control is the gold standard for communication in Rett syndrome. Using special computers (talkers), the girls can select symbols via eye contact and thus actively communicate with their environment.
- Mobility & stability: Due to the balance problems and increasing scoliosis, individually adapted wheelchairs or rehab buggies with fixed side supports and headrests are important. A standing trainer supports bone density and improves breathing.
- Hand protection & function: Special arm splints or soft bandages can be helpful to reduce painful hand wringing or to bring the hands into a functional position for a short time.
- Positioning for eating & learning: A stable therapy chair with good trunk support is essential to support swallowing function and enable concentration on eye control.
- Sleep & positioning: Due to sleep disorders and the risk of spinal curvature, special positioning systems or mattresses help to maintain a relaxed and healthy posture at night.
Learn more
You can find more helpful information about Rett syndrome here:
www.rett.de