Note: In 2012, John Walsh from Stomawise website: which is based in the United Kingdom, invited Thomas Exler to write about his story for the My Story section of Stomawise website. Also at end of this blog are the links to articles from the UroMed Hometown Heroes blog; which they featured Thomas Exler and Courage to Shine for 5 days in January 2012.
In February 7, 2017, I was featured on the ConvaTec Website: Me+ Community: Thomas Exler
Edited: February 10, 2017
Hello my name is Thomas Exler, from Pittsburgh, Pennsylvania, USA
For many years now, I have had been given a great opportunity to meet so many amazing people from all over the world, not in spite of, but because I was born with a rare birth defect called bladder exstrophy. My life has had numerous blessings because of it, and on the whole the blessings have gratefully outweighed all the negatives I have had to personally endure.
My name is Thomas Exler and I am currently the board president (now vice president) of the Association for the Bladder Exstrophy Community (A-BE-C), 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.
What is bladder exstrophy? The word Exstrophy is derived from the Greek word ekstriphein, which literally means to “turn inside out.” Bladder exstrophy is a malformation of the bladder, in which the bladder and related structures are turned inside out. The skin of the lower abdominal wall that normally covers the bladder also does not form properly and is separated, thus exposing the inside of the bladder to the external world. If you imagine a balloon that has been split and opened up so that the inside of the balloon is visible, you will have a picture of what has happened – Source: www.bladderexstrophy.com
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 pediatric 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 later, 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, (ostomies) 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. However, in an odd way, It also prevented me from asking the question, “am I alone?” Since I always knew the answer, I was not.
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 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, so I am able to do have the financial resources to help others today.
Over the years, I have had the opportunity to volunteer at various medical camp programs for teens with intestinal diseases or intestinal and urinary diversions or alterations, and in 2001 I even founded the Young Adult Network under the now defunct United Ostomy Association. In addition today I am currently still a consultant and board member to the Pittsburgh Ostomy Society and recently have been consulting, and a board member of with a new non-profit called, Jamie’s Dream Team, which helps children, adults and families dealing with life threatening illness or trauma by helping to make their dreams come true.
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 are always asked.
Over the years, I have also become a great support of medical camp programs, or parents’ conferences or programs like Breakaway in the United Kingdom.
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 Foundation 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.
In early 2010, I founded a group called Courage to Shine, www.courage-to-shine.org which will eventually be a patients awards program as well as a website that will feature individuals who were born with genitourinary birth defects, and have also grown up to become amazing role models as adults. Eventually this website, which was launched on the 1st of January 2012, 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 will meet through our contacts or people we will come in contact during our travels.
Breakaway is a residential program for young people between 4 -18 years of age, living with a bowel and/or bladder diversions or dysfunctions along with their respective families, and I highly recommend ever one at the very least financially support this wonderful project. It is such a wonderful program that someday in the future, I would love to bring a similar program to the United States, and have already looked into some properties to hold an event like Breakaway in the USA.
It was another 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, or 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 that we can give them, that little hope, is all they are looking for, and it is a privilege and honor to attend great events like Breakaway.
In 2012, Misty Blue Foster and I were invited to attend and to speak at the ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Avila, Spain from Friday, November 23 – Sunday November 25 2012.
Courage to Shine™ Team gave motivational presentations based on their own experiences living with bladder and cloacal exstrophy, and participate in workshops during the conference, as well as interact on a personal level with many of the families who attended the ASEXVE Medical Conference.
ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Alvia, Spain – Programa encuentro medico Asexve 2012
Then on April 16, 2014, I unfortunately had a stroke, which hospitalized me for 3 days but left me frustrated that I could not go back to work, and eventually I was laid off because of it. However I have totally recovered and moving on with my life
Therefor in early February 2015, I was informed and honor, that I would be 1 of 50 people who will be awarded the 2015 Jefferson Award for the Pittsburgh, Pennsylvania, in May 4, 2015. It was printed in the Pittsburgh Post-Gazette on February 27, 2015. Thomas Exler – 2015 Jefferson Award – Pittsburgh Post-Gazette -Pg A6 – Feb 27 2015 Here is a link to the pictures from the Jefferson Awards presentation that was held on May 4, 2015
In March of 2015, I was nominated for an Everyday Hero by Values.com this is offered by The Foundation for a Better Life
In July of 2015. I was nominated for the 2015 RARE Champions of Hope – Advocacy this is offered by Global Genes.
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.
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?”
To contact Thomas Exler you can do so at email@example.com or to know more about any of the groups below please go to their respective website.
When parents learn that their children have a medical issue like bladder exstrophy, often their dreams for those children cease, and the parents suffer along with the children. However, on the front page of the Courage to Shine website, we can show parents what their children can achieve, and what other people with the same or similar medical problems have gone on to do and become. The parents of these special children need a place where they can get information about what their children can achieve, and examples of people who’ve overcome similar challenges to prove there isn’t anything they can’t do.
These parents need to see that their children’s dreams can be accomplished and that the best way to treat their children is not as though they have disabilities, but rather that they don’t have any excuses for not being successful. If the child has siblings, don’t treat that child any differently than you do your other children. By parents focusing on what children with disabilities can do, then they’ll gain the potential to be as successful, if not more successful, than their able bodied siblings. These children have the opportunity to gain as much courage as their brothers and sisters. If these children overcome fear and learn a strong work ethic, there’s nothing in this world they can’t achieve that they want to achieve
Once, I heard a speaker say, “When I became paralyzed, I didn’t spend much time thinking about the 1,000 things I couldn’t do. I began to think about the things I could do, and what a wonderful life I would have if I did those things, instead of worrying about the ones I couldn’t do.” A wall or a mountain simply presents an opportunity to learn another way to get over an obstacle that maybe no one else has discovered yet. A wall is an opportunity to challenge your creativity, your ability to innovate and adapt, and your chance to see just how strong your work ethic really is.
Through these processes, you’ll do unbelievable things and accomplish unbelievable feats. We can prove that what I’m telling you is the truth when you hear positive stories and check out Courage to Shine. There’s always a way to solve a problem, and just because no one else has been able to solve that problem, doesn’t mean that you can’t. A man once said, “The only things in life worth doing are the things that seem to be impossible.” If we can show people with medical challenges that greatness is possible, and that there are others like them, who have obtained greatness, then we can change the lives of the medically challenged forever. A medical problem shouldn’t be used as an excuse to not find and develop the greatness that’s within you.
For the first year or two of Courage to Shine’s existence, our main goal is to reach out to people with urinary defects. We’ll also have articles about other types of challenges and the people who have had these problems and still have achieved great things with their lives. Since Courage to Shine has started with thebladder exstrophy community, we initially will be targeting young people with urinary birth defects and their parents. However, we want to show great examples of individuals who never have let their medical challenges hold them back or prevent them from becoming great.
Association for the Bladder Exstrophy Community (ABC): www.bladderexstrophy.com
Courage to Shine: www.courage-to-shine.org
Pittsburgh Ostomy Society (POS): www.facebook.com/pages/Pittsburgh-Ostomy-Society/190575250971420
Breakaway Foundation: www.breakawayfoundation.org.uk/
Jamie’s Dream Team: www.jamiesdreamteam.org
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