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TextOctober is Rett Syndrome Month
Office of Public Affairs
12000 Government Center Parkway, Suite 551
Fairfax, VA 22035-0065
703-324-3187, TTY 703-324-2935, FAX 703-324-2010
Oct. 1, 2003
October is Rett Syndrome Month
On Monday, Sept. 29, the Fairfax County Board of Supervisors proclaimed
October as Rett Syndrome Month in the county.
Rett syndrome is a disease seen predominantly in females that is often
misdiagnosed as autism or cerebral palsy. In fact, 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
10,000-23,000 girls. It is estimated that there are 8,000-10,000 girls
who are misdiagnosed.
Rett syndrome is a neurological disorder that occurs in a variety of
racial and ethnic groups worldwide. 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, and doctors have recently discovered the specific gene that
causes this disorder. Doctors hope that 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 your 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 (IRSA) at 9121 Piscataway Road, #2B, Clinton, Maryland 20735,
or call 301-856-3334 or 1-800-818-RETT, TTY 711 or visit the IRSA Web
site at www.rettsyndrome.org.
FAIRFAX COUNTY IS COMMITTED TO A POLICY OF NONDISCRIMINATION IN ALL COUNTY PROGRAMS, SERVICES AND ACTIVITIES AND WILL PROVIDE REASONABLE ACCOMMODATIONS UPON REQUEST. TO REQUEST SPECIAL ACCOMMODATIONS, CALL 703-324-3187 OR TTY-703-324-2935. PLEASE ALLOW FIVE WORKING DAYS IN ADVANCE OF EVENTS IN ORDER TO MAKE THE NECESSARY ARRANGEMENTS
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