What is Rett Syndrome?
- Rett Syndrome is the most physically disabling of the autism spectrum disorders.
- It strikes at random in early childhood, affecting little girls almost exclusively.
- Many girls live into adulthood, requiring total, 24-hour-a-day care.
- There is no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures.
- First recognized only 25 years ago, the prevalence of Rett Syndrome equals that of Cystic Fibrosis, Huntingtons and ALS but is vastly underfunded in comparison to those disorders
Symptoms include:
- Loss of speech and motor control
- Functional hand use replaced by compulsive hand movements
- Disordered breathing
- Severe digestive problems
- Orthopedic abnormalities including scoliosis and fragile bones
- Disrupted sleep patterns
- Extreme anxiety
- Seizures
- Impaired cardiac and circulatory function
- Parkinsonian tremor
The costs, both financial and in terms of human suffering, are enormous.
