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Association for the Bladder Exstrophy Community
West Allis, Wisconsin
Cause Description:
The Association for the Bladder Exstrophy Community,
established in June 1991 (formerly known as the
Association for Bladder Exstrophy Children), is an
international support group network comprising
individuals with bladder exstrophy, local parent-
exstrophy support groups, and health care providers
who work with patients and families living with
bladder exstrophy. We collect resources, talent, and
information to assist patients and families living
with bladder exstrophy to help them master the
medical and psychosocial issues relating to
exstrophy.
Bladder exstrophy is an initially devastating,
congenital birth defect that results from abnormal
development of the cloacal membrane and occurs in 1
in 30,000 births. This anomaly is most common in
boys and has obvious physical defects - a misshapen
penis (or vagina), a shortened urethra, an exposed
incompetent bladder, and widened ureters. With
current medical procedures, the patient with
exstrophy has a good chance for urinary continence
with surgical reconstruction or through intermittent
catheterization. However, this positive medical
outcome occurs through great pain and sacrifice on
the part of the children and their families. The
child with exstrophy undergoes multiple surgical
procedures, associated lengthy hospitalizations, and
many repeated outpatient visits and treatments, all
of which impact the child's psychosocial, cognitive,
and behavioral development.
The ABC accomplishes its support function primarily
through ABC Update, its quarterly newsletter. ABC
Update provides a forum in which issues, questions,
and concerns about exstrophy can be discussed. We
are also involved in conducting support group
meetings across the country to allow for patient and
family interaction, guest speakers, and other
educational and supportive functions. We endeavor to
provide informational resources and emotional
support to patients and families living with bladder
exstrophy in order to empower them to cope with the
psychosocial and medical issues of this problem.
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