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 – http://www.courage-to-shine.org

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:👇 https://youtu.be/wp8J-ubR-gc

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: https://www.facebook.com/christy.crowe

Mrs. Patsy Pope original video: https://youtu.be/wp8J-ubR-gc

If you would like to write Patsy do so by writing Patsy@courage-to-shine.org

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: http://www.courage-to-shine.org

Facebook: https://www.facebook.com/couragetoshine/

Twitter: https://twitter.com/Couragetoshine1

YouTube: https://www.youtube.com/user/CourageToShine

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 Paula@courage-to-shine.org

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: http://www.damonlittle.com/ 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…

Kaitlin Morris – Finding Bravery in Unexpected Places


Note: I first met Kaitlin, when I came to Sydney, New South Wales, Australia to speak at the 2010 BEECH Australian Community Conference in June, 2010 – Thomas Exler YouTube: Mrs. Morris  Finding Bravery in Unexpected Places By Kaitlin Morris Hi there, I am Kaitlin (Sheedy) Morris,  I was born on April 15, 1992 with classic…

Rachel Jury – Rocking2Stomas.co.uk


Rachel Jury of Rocking2Stomas.co.uk and her blog. By Rachel Jury My name is Rachel, and I am a 31-year-old woman from the UK who has been ill now for 10 years. I am a proud double ostomate with a permanent urostomy and ileostomy! It has been a journey, to say the least not just physically but…

2018 Courage to Shine™ – Thomas McKeon Ludlow – June 9, 2018


13-Year-Old Tommy Ludlow Receives Courage To Shine™ Award Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge into opportunity. Tommy received the honor, in part, because he is by all available accounts the first bladder exstrophy patient to hike to Mt. Everest Base Camp. The 12-day…