November 11, 2018
People with bladder exstrophy are at greater risk for developing urinary tract infections. (UTIs). As part of Bladder Health Month, Dr. Ranjiv Mathews, Director of Pediatric Urology and Professor at SIU Medicine took a break from surgery to share some insights about UTIs especially for bladder exstrophy patients and their parents. Download the accompanying handout. https://www.youtube.com/watch?v=CWIv9AlHbLc
October 23, 2018
The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more than two years ago. You may remember first reading about him in 2016 as an untreated bladder exstrophy patient in constant physical pain. After two successful surgeries, last year’s “good news” post reported Johnson was no […]
July 6, 2018
The Association for the Bladder Exstrophy Community (A-BE-C) wants to shorten the time it takes families to find complete and effective care for their children born with bladder or cloacal exstrophy. That’s why A-BE-C is launching a Centers of Excellence program that recognizes best-in-class care. The first eight U.S. hospitals to report meeting its rigorous criteria […]
June 3, 2018
At the 2016 International Exstrophy Conference, several young attendees shared their insight and expertise about living with bladder exstrophy. Take a moment to enjoy and absorb their valuable words and wisdom!
May 24, 2018
A handful of teens with bladder exstrophy were recently recruited to try out a new kind of event: a camping trip with Dr. Bradly Kropp of Cook Children’s and the entire exstrophy team. Based on initial feedback, it’s destined to become an annual event. Anna Block, a 12-year camper on the trip took the time […]
January 12, 2017
The 9th annual Operative Workshop on Exstrophy and Epispadias Complex got underway just after the first of the year in Ahmedabad, India. Nearly 100 exstrophy patients received treatment from an international team of experts. Patients and their families made journeys from all over India to the Main Civil Hospital for surgery, check-ups and other procedures. Several other doctors […]
November 28, 2016
At seven, Johnson (Ndyabagye) is old enough to understand that his body is different from those of his two brothers. He is old enough to understand that he cannot use the toilet like other children his age. And he realizes that he will not find relief from his constant physical pain until he receives surgery […]
October 24, 2016
We are pleased to announce that three mental health providers have joined the advisory board of the Association for the Bladder Exstrophy Community (A-BE-C). All three specialize in pediatric urology and are active in the bladder and cloacal exstrophy community. Many of the world’s leading medical experts in the treatment of bladder exstrophy have long […]
August 10, 2016
Dr. Gearhart provides details about what makes a successful primary exstrophy closure, why some closures fail, how to prevent failed closures, the types of failures and the treatment of failed closures.
June 23, 2016
Dr. Paul Merguerian discusses the management and long term outcomes of children with bladder exstrophy and epispadias, the initial management of pelvic osteotomies, and the goals of long-term management.