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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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