A chance encounter leads to groundbreaking bladder exstrophy research

During a recent conversation with the Association for the Bladder Exstrophy Community, Dr. Wei Cheng (郑伟) recounted his chance encounter with bladder malformation in a mouse. This encounter ultimately led an international research team to identify the gene and mechanism that causes bladder exstrophy in humans.  more

Johns Hopkins seeking participants with bladder exstrophy for clinical trial

The pediatric urology team at Johns Hopkins is looking for bladder exstrophy patients to participate in a clinical trial. Participants must have a history of ... more

CompactCath offering free samples of new discrete catheter

For many bladder exstrophy patients, catheters are a source of frustration or embarrassment. The new CompactCath was created to replace the large, clunky design ... more

8 Healthy Cathing Habits

Download the 8 Healthy Cathing Habits poster! It's a free PDF file that is ready to print. Catheritization or "cathing" is a fact of life for many ... more

Kidney safe medications

Kidney health is especially important to bladder exstrophy patients and many commonly used pain relievers, medications and supplements can have harmful effects. ... more

Blood samples needed for new scientific trial

Blood samples needed for new clinical trial Dr. Heiko Ruetter, lead researcher at the University of Bonn Hosptial studying the link between a gene mutation and ... more

Major League Baseball & Bladder Exstrophy

MLB agent Joshua Kusnick courageously shares his journey living with bladder exstrophy in a profile by former Sports Illustrated reporter Joe Lemire in The Cauldr... more

How much medical care is involved?

Treatment for exstrophy of the bladder begins at birth. The most important goals in the care of a boy or girl with bladder exstrophy are to: preserve normal ... more

How many are born with bladder exstrophy?

Bladder exstrophy is rare disorder that happens in about 1 in 30,000 babies. It is more likely in boys than girls. Cloacal exstrophy (a form of bladder exstrophy) ... more

When does bladder exstrophy develop?

The condition of exstrophy occurs during the development of the embryo (the name given to the baby during this stage) very early in the pregnancy, about 4 to 5 ... more
Diagnosed

How is bladder exstrophy diagnosed?

Sometimes, exstrophy is diagnosed when a pregnant woman has an ultrasound. The ultrasound doctor (radiologist) might notice the bladder is not full. But unborn ... more

What causes bladder exstrophy?

We don’t know what causes exstrophy and to date medical science has no explanation for why an embryo may develop bladder exstrophy. The problem occurs 4 to 8 ... more