You're Not Alone
We know that hearing the initial diagnosis of bladder exstrophy can be devastating. It can also feel extremely overwhelming, leaving you feeling isolated. A-BE-C is here to help you navigate each step of your journey through bladder exstrophy.
What is Bladder Exstrophy?
Bladder exstrophy is a rare birth defect in which the bladder has not formed correctly at birth. In most cases, the bladder and genitals are split in half, turned inside out and sit outside the body. If you can imagine a balloon that has been cut in two, opened up so that the inside of the balloon is visible, you will have a picture of what has happened.
Bladder exstrophy is treated with surgery. It is critical to work with experienced surgeons and other providers who have the knowledge, skills and experience to treat exstrophy patients through all stages of life.
Getting Started
Association for the Bladder Exstrophy Community (A-BE-C) is working to make the highest standards of treatment available to all who are affected by bladder exstrophy. Whether you are a parent of child or an adult with this condition, or a member of the medical community, A-BE-C is here for you.
Here are a few of our favorite videos to help introduce you to bladder exstrophy and answer some of the most common questions and concerns.
You can also download this helpful Ebook, created by Boston Children’s Hospital.
Talking About Your New Baby
Webinar with Emily Haddad, LCSW
Living With Bladder Exstrophy
Webinar with Dr. William Reiner
Exploring the Gene Mutation Discovery
Webinar with Dr. Heiko Reutter