Kimberly Allen, Association for the Bladder Exstrophy Community

I was born with bladder exstrophy—a rare and complex congenital urological condition where my abdomen and pelvis did not develop properly in utero. My bladder was inverted and protruded through my abdominal wall, and my pubic bone was separated. I required extensive reconstructive surgeries in early childhood to achieve continence and adequate urinary system development, and I’m grateful my repair was completed before kindergarten so I was fully dry before beginning school.

However, the difference between pediatric urology care and adult urology care is vast, over the lifetime of the exstrophy patient. We intuitively understand the value of a multidisciplinary coordinated care team in the pediatric system, but that patient “graduates” from a children’s hospital at age 18 years and must find an adult urologist. Throughout their life, they may need to find care—when they go off to college, move to another city, or when their urologist retires. And so much of the fellowship-trained reconstructive expertise is on the pediatric side, which makes it difficult for some adult patients to find an experienced adult provider who practices nearby.

In 1991 the Association for Bladder Exstrophy Children was established to support children with exstrophy. More recently, the name changed to the Association for the Bladder Exstrophy Community to be inclusive of adult patients but still lacked support for adults. In 2023 I joined as a volunteer, to create resources and support for adults. In early 2024 we established an Adult Patient Advisory Council, and in late 2024 we initiated our first patient focus group to understand adult needs. In 2025 we will publish an adult provider network listing, create materials to ease transition from peds to adult care, and build a database of bladder exstrophy research summaries for the layperson. We are only 1 year into these volunteer projects but have uncovered some valuable findings about our audience:

• Regardless of the expertise of the pediatric urologist, their patients will always outlive them. Young adult patients need help finding a new provider while also managing their condition.
• Often parents haven’t communicated surgical details to their teen or young adult. When that 25-year-old arrives by themselves to a new urologist appointment, it’s difficult for that provider to know where to start.
• Patients need help understanding which parts of their medical record are most valuable to a new provider (spoiler alert—it’s usually surgical notes!).
• Patients want to work with providers who understand their goals, and often that’s avoiding additional surgery.
• Most exstrophy patients are otherwise healthy and just want to be done managing their condition. This means some adult patients never seek care, often waiting to establish care with adult providers until they are middle-aged, and it’s an urgent situation. Our advocacy programs must serve the patient at all stages of their life.

This is an exciting and dynamic time within our adult patient community, and we believe our resources will benefit both patients and providers, across all urological conditions requiring lifelong urology care. I am grateful for the opportunity to share more details of our advocacy projects at the 2025 AUA Patient Perspectives Program.