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.

2023 Great Lakes Chapter 14th Annual Summer Campout

July 28 – July 30, 2023 You are invited to join us for a weekend campout for anyone with bladder exstrophy, cloacal exstrophy, cloaca, epispadias and hypospadias, and their families and friends. This is a great way to connect with other families, share in similar experiences and know that you are not alone!  To view some videos…

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…

Mrs. Patsy Pope – Bladder Exstrophy – A Miracle Happened

Mrs. Patsy Pope l Bladder Exstrophy l A Miracle Happened l Urostomy l Courage to Shine l Oct 28 2022 –

92 Year old Patsy Pope of Tennessee born with Bladder Exstrophy and all her medical challenges she has had in live with including a ureterosigmoidostomy then a ileal conduit – urostomy, and her life, marriage and children, Great Story and truly a Courage to Shine story,

Christy Humberd, Wrote:

I was blessed to visit with Mrs. Patsy today. She was born in 1930 with “bladder exstrophy” and has an amazing testimony! Doctors told her parents that her life would be short. But God had other plans! Take some time this weekend to listen to “A Miracle Happened” Click this link:👇

I am blessed to know Mrs. Patsy. She came up to me at church and gave me a written copy of her testimony. As soon as I was home, I read it and the tears flowed. This amazing Christian woman has been through a life with many difficulties. She has leaned on the Lord and at 92 years old she stills gives praise to Jesus!💖

Thank you Christy Humberd for the video:

Christy Humberd Facebook Page:

Mrs. Patsy Pope original video:

If you would like to write Patsy do so by writing

Courage To Shine ™, Turning Adversity to Triumph,

Courage to Shine™ was founded to acknowledge, motivational and inspirational individuals and/or groups of patients whom have overcome congenital genitourinary birth defects and/or major urological surgeries in their childhood (but not limited too), and have the courage, strength and determination, to transform that adversity to triumph later in life.

Courage To Shine ™ website:




Paula Erwin-Toth

Paula Erwin-Toth is from near Cleveland, Ohio, who not only was born with bladder exstrophy, but became a nurse and was the Director of Cleveland Clinic Wound, Ostomy and Continence Nursing School Email Paula at

Dilara Arslan – A Scientist from Istanbul, Turkey

Dilara Arslan – A Scientist from Istanbul, Turkey By Dilara Arslan Hi Everybody, I am Dilara from Turkey.  I was born as likes some of you with a bladder exstrophy in 1991, İstanbul, Turkey.  To treatment of my bladder exstrophy was needed a series of operation since my born. I don’t remember my early ages….

Damon Little

Damon Little Damon Little is a National Gospel and Grammy Winner Artist, I (Thomas Exler) ran into his at the United Ostomy Associations Conference.  During his childhood he has many surgeries and live with a colostomy for years. Damon Little: Damon Little / Be Alright-2019:  Courage To Shine™, Turning Adversity to Triumph, Courage to…

Anja Christoffersen – Behind The Smile

Note: Anja Christoffersen released her book Behind The Smile in October of 2018.  You can view her website at Anja Christoffersen.  By Anja Christoffersen At 28 weeks of pregnancy, my parents found out I had a life-threatening condition that malformed most bodily systems. Devastated, my parents began a search for answers. There was no cause identified and…

Paul Young – I’m Going to Talk About Me

Note: Paul Young wrote about his experiences for The Urological Foundation in the United Kingdom Paul Young is an award winning stand up comedian and writer who has written for shows including Top Gear, Miranda, and Not Going Out. He works under the stage name of Paul Kerensa. I’m Going to Talk About Me By Paul Young…