Bladder Exstrophy, Resilience, and Global Advocacy: The Journey of Thomas Exler

By Thomas Exler
Vice President, Association for the Bladder Exstrophy Community (A-BE-C) | Founder, Courage to Shine™

Introduction

Born with a rare congenital birth defect known as bladder exstrophy, I have spent my life navigating medical complexities while building meaningful connections with individuals, families, and professionals around the globe. Rather than viewing my condition as a limitation, I have long chosen to see it as the foundation for a purposeful life of service, advocacy, and education.

Bladder exstrophy has brought me numerous challenges, including multiple surgeries and long hospital stays as a child. Yet, it also offered me countless blessings—chief among them, the opportunity to become a lifelong advocate for others living with similar conditions.

Understanding Bladder Exstrophy

Bladder exstrophy is a complex congenital anomaly in which the bladder is turned inside out and exposed outside the abdominal wall. The term “exstrophy” comes from the Greek ekstriphein, meaning “to turn inside out.” The condition is extremely rare, occurring in approximately 1 in 40,000 live births. It often requires multiple reconstructive surgeries and, in many cases like mine, leads to the formation of a urostomy.

In 1969, prior to my fourth birthday, it was determined that my bladder tissue could not be used for reconstruction. I underwent surgery for a urostomy (ileal conduit), and a few months later, my bladder was surgically removed. From a very young age, I became intimately familiar with life as a patient with a stoma.

A Foundation Built on Family and Support

I was fortunate to have been raised by a compassionate and capable family. My mother, a newly trained nurse at the time of my diagnosis, became my strongest advocate. She had previously cared for a child with a colostomy during her nursing training—a poignant coincidence that later informed her approach to my care.

My mother and my pediatric surgeon saw a need for greater community support for families with children living with stomas. Together, they co-founded the Children’s Tri-State Ostomy Association, based in Pittsburgh, Pennsylvania. It was the first known organization in the world dedicated exclusively to children with ostomies, and it remained active until 1982.

Being part of this organization from such a young age gave me early insight into the challenges and triumphs faced by others. I never had to wonder whether I was alone in my experience—because I always knew I wasn’t.

Advocacy Through Experience

Throughout my life, I have been committed to using my experiences to support others. After college, I began working in healthcare administration, a field I continue to work in today. This professional background gave me both the resources and flexibility to dedicate myself to patient advocacy on a national and international scale.

In 2001, I founded the Young Adult Network under the United Ostomy Association (UOA), creating a platform for young adults living with intestinal and urinary diversions. I also served as a long-term counselor for the UOA Youth Rally, a life-changing summer camp for teenagers living with ostomies and similar conditions.

In 2010, I established Courage to Shine™, a patient-centered initiative that honors individuals born with genitourinary birth defects who have grown to become outstanding role models. The project also serves as a platform for motivational presentations and global outreach.