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Hope thru Exstrophy!

February 17, 2017

 

       Hello my name is Thomas Exler. I am from Pittsburgh Pennsylvania.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.

I am currently the board president (now vice president) of the Association for the Bladder Exstrophy Community (A-BE-C www.bladderexstrophy.com.

 

    What is this company and what does it do ?

 

     Its 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.Thomas Exler on the left at the age of 4, with his second cousin also born with bladder exstrophy, two weeks apart. 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.Children’s Tri-State Ostomy Association Banquet – Pittsburgh, Pennsylvania – October 1973.

 

    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.Thomas Exler speaking at the 2009 ABC/HEA Exstrophy, Epispadais & Hypospadias Conference in Pittsburgh, Pennsylvania in August 2009 – On the screen is Thomas Exler as a child in the hospital with his father.

 

    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.Speaking about living with bladder exstrophy and having a urostomy, to a surgical nursing organization in Pittsburgh, Pennsylvania in January of 2011.

 

    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.

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. http://www.breakawayfoundation.org.uk/Courage to Shine Team & Breakaway Board & Volunteers in May 2011Therefore 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.mIn early 2010, I founded a group called Courage to Shine, www.courage-to-shine.org which will eventually be a patient 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.TV interview in March of 2011Breakaway 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, 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 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: Climbing Sydney Harbour Bridge, Febuary 2006, Sydney, NSW, AustraliaIn 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 Alvia, 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 I have totally recovered and was moving on with my life. Therefore, 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. – 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.

 

      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. Speaking at the ASEXVE Conference in Spain in Nov 2012.

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 texler@courage-to-shine.org. .


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