January 16, 2023
Rachel Althizer is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Ahmedabad, India, as a social worker to assist children and families with exstrophy as they prepare for surgery.
July 6, 2021
We recently had the rare opportunity to get some words of wisdom from Australian, Tom Flood, who was born in 1930 with bladder exstrophy. In those days, very little was known about bladder exstrophy and no treatment options were available. His parents were told that Tom was not expected to survive and if he was not in pain, just to leave things as are. But Tom had other plans!
May 11, 2021
A-BE-C has teamed up with a group of physicians in a coordinated effort to send much needed oxygen concentrators to partner hospitals in major cities in India, to aid in their continued fight against Covid. India is experiencing the world’s worst outbreak, with 400,000 new cases each day.
May 23, 2019
The 11th annual workshop in Ahmedabad, India Was a resounding success thanks to a dedicated international collaboration of medical experts. For the 5th year, A-BE-C was among the visiting team of 27 pediatric surgeons, nephrologists, anesthesiologists, nurses, social workers, and researchers united in the shared passion for the treating the humbling condition of bladder exstrophy. A-BE-C […]
November 12, 2018
When a child in the US is born with bladder exstrophy, it can be both shocking and devastating. With ultrasound technology many parents have already been given the bladder exstrophy diagnosis before birth, but it is still overwhelming for parents to see the defect and be hurdled into a world of surgeries, information and follow […]
November 5, 2018
Ibriham was born with bladder exstrophy in northern Uganda. The condition was unfamiliar to local health workers. Though there was nowhere to turn for help, his father never gave up hope on treatment for his son. At great sacrifice, they traveled to hospitals in Uganda, Sudan, and the Congo looking for help before a connection […]
October 31, 2018
My story with exstrophy begins in a small country located in eastern Africa called Uganda. Uganda is commonly referred to as ‘the Pearl of Africa’ given its abundance of natural resources and lush climate. It is a country of approximately 40 million people with over half the population under the age of 15. It is also […]
October 23, 2018
The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more than two years ago. You may remember first reading about him in 2016 as an untreated bladder exstrophy patient in constant physical pain. After two successful surgeries, last year’s “good news” post reported Johnson was no […]
October 19, 2018
A team from A-BE-C, including Executive Director Pamela Block and Board Member Janet Gibson visited several bladder exstrophy patients living in Uganda in September 2018. Pamela Block shares the following reflections. It takes some time to reflect on the enormity of the challenges of life with bladder exstrophy in Uganda. The stories are hard to […]
April 25, 2018
With every bladder exstrophy patient there is a story of resilience and hope. A new chapter of young Ugandan Ndyabagye Johnson’s story has been written and we are delighted to to share it. You may recall Johnson was featured in a post in November of 2016 (Seven-year-old Ndyabagye finally gets a chance at healing). Back […]