December 3, 2019
Sadly, the beginning of Johnson’s story is one of many – there are hundreds of children just like him that are feeling hopeless and helpless. Who are suffering without access to care and treatment. And for every child like Johnson, there are parents feeling the anguish of not being able to properly care for their […]
November 27, 2018
The Uganda Initiative is launching as part of A-BE-C’s work in global care for bladder exstrophy. See how–together–we’re already making an impact in this special preview of our new extraordinary documentary. [button url=”https://secure.qgiv.com/for/eyx8js” style=”xsmall|small|normal”]Give Today[/button]
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 […]