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.
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
I have a stoma.
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/
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 or to know more about any of the groups below please go to their respective website.