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What is Rett Syndrome?

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What is Rett Syndrome?

All material Copyright© 2008-2010 Rett Syndrome Research Trust
Reprinted with the express permission of Rett Syndrome Research Trust (RSRT) as originally published on their website.

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

Featured Organization: Rett Syndrome Research Trust (RSRT)

Rett Syndrome Research Trust is a 501©(3) nonprofit organization intensively focused on the development of treatments and cures for Rett Syndrome and related MECP2 disorders. The strength of the Trust is based on the guidance of founders and advisors who are largely responsible for the major advances in Rett research over the past decade.

Please support our contributing organizations and visit Rett Syndrome Research Trust

Tags: Article Rett Syndrome OT PT SLP