October is Rett Syndrome Awareness Month


Fairfax County Office of Public Affairs
12000 Government Center Parkway, Suite 551
Fairfax, VA 22035-0065
703-324-3187, TTY 711, FAX 703-324-2010

Oct. 26, 2005

October is Rett Syndrome Awareness Month

On Monday, Oct. 17, the Fairfax County Board of Supervisors proclaimed October as Rett Syndrome Awareness Month in the county. Rett syndrome is a disease seen predominantly in females that is often misdiagnosed as autism or cerebral palsy.

Rett syndrome was not recognized in the American medical community until 1983. Many doctors still are unfamiliar with this disease which occurs in one out of every 10,000-15,000 girls. There are approximately 200,000 girls and women worldwide who have Rett syndrome.

Rett syndrome is a neurological disorder that occurs in a variety of racial and ethnic groups. A child with this disease usually demonstrates normal development until 6-18 months of life. A period of temporary stagnation or regression occurs next, after which the child may be unable to talk or use her hands. Other problems may develop including seizures, disorganized breathing patterns and loss of mobility.

The most debilitating aspect of the disorder is apraxia, which means that although the will to move is present, the child lacks the ability to control every body movement, including eye gaze and speech. This severely limits the girl’s ability to communicate. Scoliosis, a curvature of the spine, is another prominent feature of Rett syndrome.

Rett syndrome is caused in most cases by a genetic mutation on the X chromosome that inhibits normal development of selected regions of the brain responsible for motor, autonomic, sensory and emotional functions. Doctors have discovered the specific gene that causes this disorder, and they hope additional research will yield the answer to how to prevent Rett syndrome from occurring.

There are many ways to help combat Rett syndrome: informing others about this little known disorder; talking with a doctor or others in the medical field who may not have heard of Rett syndrome; giving generously to help find a cure; or providing help to someone who is a caretaker, because a lifetime of caretaking can place a severe strain on a family.

For more information, contact the International Rett Syndrome Association at 1-800-818-RETT, TTY 711, or visit the IRSA Web site at www.rettsyndrome.org.

 

To request this information in an alternate format, call the Office of Public Affairs at 703-324-3187, TTY 711.

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