My name is Thomas Exler and I am currently the board president of the Association for the Bladder Exstrophy Community (ABC).
An international support network of individuals with bladder exstrophy, including classic exstrophy, cloacal exstrophy, and epispadias, through local parent exstrophy support groups, healthcare providers working with patients and families living with bladder exstrophy.
Given that I was born with bladder exstrophy, I was required to make many hospital visits in my younger years of life, so therefore spending many weeks at the hospital during the summers breaks became a common summer activity. However I was blessed to have parents, as well as an entire family, that were there to be a great source of support. While at the same time, they treated me as they would any other member of the family, and most importantly, I received no special treatment because I was born with a birth defect.
Nevertheless in 1969, after it was realized by my paediatric surgeon, that he would be unable to use my bladder tissue. I had surgery for a Urostomy (ileal-conduit), which was a month before my forth birthday. Then within a few months, I again had my bladder surgically removed. However again I was blessed, I had a mother who was not only a new nurse, but I can remember her fondly talking about an orphaned baby boy she took care of with a colostomy during her nursing training, and who would of thought, just a few years later she would have a son who would also need a stoma.
Later that same year, my surgeon and my mother got together and had the idea that there must be many parents out there, who had children with stomas (ostomies), that needed support, and they founded the first organization in the world, dedicated to just children with stomas, and named it the Children’s Tri-State (Pennsylvania, Ohio & West Virginia) Ostomy Association which was based in Pittsburgh, Pennsylvania until it closure in 1982.
This association gave me an enormous opportunity growing up, that I would not realize until many years later. It gave me a chance to view and meet children my own age, who were facing far more severe health issues, this not only taught me about compassion, but they also inspired me, to continue helping people that I am still doing today.
While during my school years I participated in many sports, and since I grew up in America, I played organized baseball from the age of 7 until my teen years, as well as hockey and later on indoor soccer (football) and Gaelic (Irish) Football.
After college I started working for a major hospital in the Pittsburgh, Pennsylvania area, and today I also currently working for another internationally known hospital and is where I earn my livelihood.
Consequently due to my long term involvement with many programs, I have had been given the chance to give presentations to many different groups across the United States, as well as in handful of other countries. However no matter where it is or the culture of that location, the same questions will be asked.
Subsequently over the years, I have also become a great support of medical camp programs, or parents’ conferences or programs like: Breakaway-Visits in the United Kingdom.
In early 2010, I founded a group called Courage to Shine, which will eventually be an awards program to feature individuals who were born with genitourinary birth defects, and whom have also grown up to become amazing role models as adults.
Therefore in April of 2011, after e-mailing back and forth with one of the founders of Breakaway, who originally contacted me personally about her daughter almost a decade earlier, I finally agreed to cross the Atlantic to the United Kingdom and to put together and lead a team of patient role models under the name Courage to Shine.
Our Courage to Shine team attended the 2011 April/May Breakaway Session of Breakaway-Visits where we participated in all the activities, while at the same time, we were there to support the parents, patients and the entire families in attendance, through our personal experiences growing up with similar challenges.
It was great experience coming to England to attend Breakaway, and every time I have had the privileged to attend one of these programs, it does not matter if it is in Australia, Canada, Germany, USA, of in the UK, the parents all have the same concerns and worries about their child’s health, and more importantly it is questions that deal with their child’s future and the fact we can give them that little hope is all they are looking for, and it is privilege and honour to attend great events.
Eventually Courage to Shine’s website, was launched on the 1st of January 2012, and will also feature some of the most amazing stories of individuals overcoming a range of medical issues, that myself or members of Courage to Shine through our contacts have come in contact with during our travels.
In closing, I can see how far people with stomas have come, around the world, since I had my stoma surgery at the age of 4 in 1969, the products we all use have come lights years and I not just talking about with pouching systems, but across the medical industry. However the biggest change over the years has been the ease of communications and travel to connect with others going through similar medical issues, this is the biggest and best change, because now no one has an excuse to ask, “am I alone?”
Although I never asked to have a stoma, and I do not know of a person that has asked before getting sick, but I do believe that having a stoma should never stop anyone from doing what they want to do or accomplish in life. Life is wonderful, and it is not about the gifts you are given in life, it really is about how you use those gifts that is important.
Courage to Shine: www.courage-to-shine.org
Association for the Bladder Exstrophy Community (ABC): www.bladderexstrophy.com
Jamie’s Dream Team: www.jamiesdreamteam.org
To contact Thomas Exler you can do so at firstname.lastname@example.org