Paul Anthony – Police Officer and Family Man

By Paul Anthony

My name is Paul Anthony. I’m 35 years old. I’m a husband, a father and a police officer.  I love my life and I love my career but it was a long challenging journey to become the man I am today. Here’s my story.

I was born on February 2nd 1988 in Brooklyn, NY. My mom was just 21 years old when I was born and my father was MIA. I was born with a condition called Bladder Exstrophy which caused my bladder to be outside of my body when I was born.  There is no known cause for this birth defect and it happens to about 1 in every 45,000 births.  I have been through 21 surgeries and over 100 procedures. There were many ups and downs throughout my life and sometimes I felt like the fight was hopeless, other times I felt like a warrior who was built for battle. While growing up I often felt like I was cursed with a condition that I did not have much control over but as I got older I realized I was also blessed, I had a huge support system. I had a mom that was by my side for every single doctor’s visit and surgery, I had 2 brothers, Dom and Joey that were there for me my entire childhood and never let me use my condition as a crutch to not play a sport or try something challenging, including getting beat up by dom, who happens to be younger than me. i ‘ still convinced he was lucky every time he beat me… all 728 times. I had a large number of cousins who were just as supportive as well as a stepfather who was there for me in his own special way. I also had a handful of aunts, an amazing uncle and a grandmother who all helped raise me.  My grandmother was my absolute guardian angel who made me feel like anything was possible. This support system never let me down and they gave me everything I needed to overcome every challenge of growing up with exstrophy, including a bit of tough love which I definitely needed growing up. Considering some of the more severe cases of bladder exstrophy i was on the lesser end of the spectrum in regards to complications and effects on my body.

Camryn Young – This New Chapter

Hello, my name is Camryn Young, I am 23 years old, and I was born with Bladder Exstrophy (BE). Being born with Bladder Exstrophy has granted me a handful of opportunities which I am beyond thankful for — but, to be honest, I did not always feel this way. Today, I am ready to share my story, and help to inspire others who may have or are currently experiencing the same journey I have.

Jenny Jones – Life’s a Polyp

I’m Jenny and my medical story started when I was about age 8. I had been experiencing chronic abdominal pain for a while. My parents knew there was a chance I had inherited the rare disease Familial Adenomatous Polyposis (FAP) from my mother and perhaps this is what was causing my abdominal pain. They began their efforts to have me evaluated by a GI specialist but would encounter barriers placed by their HMO insurance. A referral to a specialist was required by a primary care doctor. However, my PCP dismissed my pain and told my parents I was “just whiny”. For me to be seen by a GI specialist, my parents decided to change to a PPO insurance plan as soon as possible so that we would never require a referral again to be seen by a specialist

Priyanka Kallur – Overcoming Mental Boundaries

By Priyanka Kallur Whenever someone asks me about my life, I never know quite what to say. For many years and even sometimes today, I don’t think of myself as anything but ordinary. However, I am reminded frequently by friends and family of how unique my life truly is. I was born in a small hospital in the suburban area of Bangalore, Karnataka, India on Shivarathri night, an important religious holiday, dedicated to the Hindu god Shiva. My life started off pretty much the same as any other baby. My mom went into labor two months early with me, and had me via cesarian section, something about amniotic fluid levels being too low. At the time of my birth doctors were prepared for a premature baby, but nobody was expecting me to be born with so many health conditions. At my birth, in addition to being premature (I was 4 pounds at birth), I was born with a rare condition called Cloacal Exstrophy/OEIS syndrome, something the doctors who delivered were not prepared to treat. Nobody up to that point had even detected my condition before, something that can be detected very early during ultrasound today. I needed multiple surgeries and a specialized incubator in a NICU, something that was not in the hospital I was born in. I also had a very high body pH at birth that they were struggling to get under control. Unable, to treat me in the small hospital, doctors told my family to take me to St. John’s hospital, at the time, one of the only specialty hospitals in the city. At barely hours old, I was loaded with my uncle into an autorickshaw, headed to St. John’s hospital, leaving my mother behind. At St. John’s hospital I was very much fortunate, that they had a pediatric surgeon who had seen my condition before and knew how to treat me. Despite having experience treating my condition, it was not an easy task. I was born with my bladder and colon connected and on the surface of my body with no skin. My pelvis was not joined together, no proper abdominal wall, and no vagina, urethra, or rectum. I also had spina bifida, sacral agenesis and mild scoliosis in my lumbar spine. It was a miracle that I survived that night, and I had multiple unsuccessful surgeries before they were able to properly stabilize me. I had to be operated on multiple times in just the first few days of my life.

Cory Conacher

MIRACLE, BABY making the NHL with Type 1 Diabetes | Bladder Exstrophy l Cory Conacher The ultra competitive world of professional sports is daunting for any athletic hopeful, let alone Tampa Bay Lightning forward Cory Conacher. As we explore the young hockey star’s journey to the NHL, we discover that dealing with type 1 diabetes…

Kylee Hunter Morgan – You Can Call Me “Smiley Kylee”

You Can Call Me “Smiley Kylee”  By Kylee Hunter You know your life will be interesting when one of the first words out of the doctor’s mouth at your birth is, “I think that’s a bladder”. My name is Kylee Hunter, I’m almost 18, and I was born with bladder exstrophy, a rare birth defect that…

2016 Courage To Shine ™ – Brittney Freeman – July 9 2016

Read more about: Brittney Freeman – Teaching Others To Shine!!  Click Here 2016 Courage to Shine™ Lisha Martinez & Adam Young Award . Brittney Freeman was presented with the 2016 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday July 9 2016. Read more about: Brittney Freeman – Teaching Others To Shine!!  Click Here Brittney Nichole Freeman is…

Jon Pierroz – Adversity to Triumph

Jon Pierroz – Adversity to Triumph   Jon Pierroz interview by Courage to Shine™ and he just got married this month. Classic Bladder Exstrophy Email to Jon: Please read disclaimer!                    

Erin Kavanagh – Being Secure & Sure of Oneself is a Beautiful Thing

Note: “Being Secure & Sure of Oneself is a Beautiful Thing” originally appeared in Ostomy Canada Magazine in the Winter 2015 Issue on pages 52-53, 56.  It is used under permission from  Ostomy Canada Magazine which is the official magazine of Ostomy Canada.  Being Secure & Sure of Oneself is a Beautiful Thing   By Erin Kavanagh I…

Jessica Sanchez – Embracing Bladder Exstrophy

My name is Jessica Sanchez.  I am 26 years old, born and raised in Washington State and I was born with classic bladder exstrophy.  But bladder exstrophy is not who I am, it’s just a part of me.  I am a daughter, a sister, a mother, a wife, a teacher, and a Christian.   I love to dance, lead worship at my church, have family game nights, and watch my daughter grow. My experiences with bladder exstrophy have been both hard and rewarding.  What may have seemed like a hardship at the beginning of my life; turned into a beautiful journey that I wouldn’t change for the world.

Emily Broeren Kohlman – My Journey!!!

By Emily Broeren First and foremost, my name is Emily Rose Broeren.  I am 23 years old, 5 foot 4, and have blonde hair and blue eyes.  I was born and raised in Kaukauna, Wisconsin, but now live in Massillon, Ohio.  My family means a great deal to me and are some of the most…

Kiersten Kelly – An Angel’s voice overcoming adversity – Part 1 of 2

Editor’s Note: I (Thomas Exler) had the pleasure of meeting Kiersten Kelly at a fundraiser for Jamie’s Dream Team on March 23, 2013, and I was so impressed with her, not only the way she presented herself, but also in her vocal talent, so please sit back and enjoy this amazing story from an international YouTube sensation…

World Rare Disease Day – February 28, 2013

The Association for the Bladder Exstrophy Community (ABC) for the first time has become a partner for World Rare Disease Day in the USA. – WORLD RARE DISEASE DAY – FEBRUARY 28, 2013 For more information click on the fliers below are go to                  Bladder Exstrophy is one of about 7,000 rare diseases listed by NORD (National…

Courage to Shine™ – Tour III – Spain – November 2012

Courage to Shine™ – Tour III – Spain – ASEXVE Medical Conference, Avila, Spain – November 23-25, 2012 News Release: Courage to Shine™ Team to Attend ASEXVE Medical Conference in Avila, Spain from November 23 –25, 2012 In early 2012, Thomas Exler and Mist Blue Foster were invited to attend and to speak at the ASEXVE (Asociación española…

12th Annual California Bladder Exstrophy Support Team Campout – August 3 – 5, 2012

12th Annual California Bladder Exstrophy Support Team Campout Friday August 3 – Sunday August 5, 2012 Campground by the Lake, South Lake Tahoe, California, USA By Thomas Exler This past August 3-5  2012, 15-20 families living with bladder exstrophy, came  together  in South Lake Tahoe, California, for the 12th Annual California Bladder Exstrophy Support Team (B.E.S.T.)…