bladder exstrophy - bladder exstrophy

11 Nov

Urinary tract infections (UTIs) in bladder exstrophy patients

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

23 Oct

Living with bladder exstrophy in Uganda: Johnson’s story continues

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 […]

6 Jul

8 U.S. hospitals are best-in-class for bladder exstrophy

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 […]

3 Jun

Kids with Exstrophy Share Their Wisdom

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!

24 May

Teens give Dr. Kropp’s first Camp BElieve for bladder exstrophy a thumbs-up!

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 […]

12 Jan

Nearly 100 exstrophy patients receive treatment in Ahmedabad, India

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 […]

28 Nov

Seven-year-old Johnson finally gets a chance at healing

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 […]

24 Oct

Mental health providers join A-BE-C’s board of advisors

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 […]

10 Aug

Failed Primary Exstrophy Closure Webinar Recording

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.

23 Jun

Webinar: Long Term Management of Bladder Exstrophy

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.

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Tag bladder exstrophy

Urinary tract infections (UTIs) in bladder exstrophy patients

Living with bladder exstrophy in Uganda: Johnson’s story continues

8 U.S. hospitals are best-in-class for bladder exstrophy

Kids with Exstrophy Share Their Wisdom

Teens give Dr. Kropp’s first Camp BElieve for bladder exstrophy a thumbs-up!

Nearly 100 exstrophy patients receive treatment in Ahmedabad, India

Seven-year-old Johnson finally gets a chance at healing

Mental health providers join A-BE-C’s board of advisors

Failed Primary Exstrophy Closure Webinar Recording

Webinar: Long Term Management of Bladder Exstrophy

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