How Does Rett Syndrome Affect a Person?
Rett syndrome is almost exclusive to girls and normally follows a progression of symptoms that worsen over a period of time. The symptoms and deterioration can be divided into four stages that affect the child in different ways.
Stage one symptoms appear between the age of six and eighteen months. They are often subtle and easily overlooked. The child may lose interest in toys and begin to make less eye contact with parents. Gross motor skills may be delayed and head growth decreases.
Stage two affects the child in more noticeable ways and the onset may be gradual or rapid. It usually begins between the ages of one and four and the child will lose spoken language and purposeful control of hands. The effects on the hands are characteristic of the syndrome and include movements such as wringing, clapping, tapping and touching the mouth as well as clasping the hands together. Autistic-like symptoms may appear during this stage with the loss of communication and social skills. Walking and motor control are impaired and head growth slows.
Stage three is called the plateau stage and usually begins between two and ten years of age. It affects the child’s motor skills, and seizures are common. Conversely, some sufferers may show improvement in communication skills, attention span and interest in surroundings. Many girls remain in this stage for the duration of their lives.
Stage four is the late motor deterioration stage and can last for years. The effects include decreased mobility due to scoliosis, muscle problems, rigidity, spasticity and abnormal posturing of limbs. The girl may lose her ability to walk, but hand control and communication skills generally remain unchanged or may even improve.