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Thomas Exler

- United States

I was born with a rare birth defect called bladder exstrophy, meaning that my bladder was turned inside out. In 1969, just before my fourth birthday, I had urostomy surgery.

As a child with an ostomy, my life could easily have been one of isolation and shame. But my family was committed to treating me like any other child. This would prove to be the motivation for and the foundation of a life dedicated to helping others overcome their own challenges.

"No matter where I speak around the world, parents have the same concern: 'How can I help my child lead a normal life?' It’s my honor and privilege to give them hope that a normal life is possible."

Shortly after my ostomy surgery, my mother and my surgeon founded the Children’s Tri-State Ostomy Association (Pennsylvania, Ohio and West Virginia), the first organization in the world dedicated to helping parents of children with an ostomy. I was closely involved in this organization and grew up surrounded by other children facing serious health issues. This inspired me and taught me compassion. It also prevented me from asking, “Am I alone?”  I knew there were many people just like me.

During my school years, I was the picture of the all-American boy, playing baseball, hockey, indoor soccer and Gaelic football. After college, I began my career in healthcare. Today, I work as a Sterile Processing Tech at a Pittsburgh-area hospital.

Over the years, I’ve volunteered at various medical camp programs for teens with intestinal diseases or diversions, and in 2001, founded the Young Adult Network, which was part of the United Ostomy Association.

I’m currently a consultant and board member of the Pittsburgh Ostomy Society, as well as a non-profit called Jamie’s Dream Team which helps make dreams come true for children and adults with life-threatening illness or trauma. I’m also the board vice president of the Association for the Bladder Exstrophy Community, an international support network of people with bladder Exstrophy.

In 2010, I founded Courage to Shine™, an award program to recognize and support people born with genitourinary birth defects.  Later in June of 2010, I took this program to Australia and again in 2011 to Iceland and United Kingdom, where I led a team of patient role models to attend the Breakaway Foundation’s annual event. Breakaway is a program for young people ages 4-18 living with a bowel and/or bladder diversion or dysfunction.

And in 2012, I spoke at the ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Spain.

 

"I didn’t ask to have a stoma. But I’m living proof that it doesn’t have to stop anyone from doing what they want to do."

In 2014, I suffered a stroke, but have successfully recovered and am back to my passion of helping others. Because of this, I received the 2015 Jefferson Award, a nomination for the Everyday Hero Award, and a nomination for the 2015 RARE Champions of Hope award.

I didn’t ask to have a stoma. But I’m living proof that it doesn’t have to stop anyone from doing what they want to do. I’ve been given a rare opportunity to meet amazing people all over the world—solely because I was born with a birth defect. My life has been blessed and I hope to continue sharing those blessings with others.

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