A-BE-C
Association for the Bladder Exstrophy Community (A-BE-C) Initiative in Uganda
The Association for the Bladder Exstrophy Community (A-BE-C) is a global nonprofit organization dedicated to improving the lives of individuals affected by bladder exstrophy. Through education, advocacy, and medical support, A-BE-C empowers patients, families, and healthcare professionals worldwide. Dr. Anthony Schaeffer of University of Utah Health serves as the medical director of A-BE-C, guiding its clinical strategy and global outreach efforts.
The African Exstrophy Outreach Initiative (AEOI)
AEOI is an initiative led by A-BE-C to provide comprehensive care for children in Uganda and other parts of East Africa with bladder exstrophy and epispadias. The program focuses on increasing access to specialized surgery and building a sustainable model for exstrophy care in Uganda by training local medical professionals in the surgical, medical, and social care of those with exstrophy and epispadias.
Understanding Bladder Exstrophy
What is Bladder Exstrophy?
Bladder exstrophy is a rare congenital condition where the bladder forms outside the body. It is part of the Bladder Exstrophy-Epispadias Complex (BEEC), which includes:
- Bladder Exstrophy: The bladder, urethra, and genitalia are improperly formed. These children have severe urinary incontinence unless and until surgery happens.
- Epispadias: The urethra does not fully develop. Many of these children have urinary incontinence, and all have improperly formed genitalia.
- Cloacal Exstrophy (O.E.I.S.): A severe form of exstrophy involving the bladder, intestines, and (often) spinal anomalies.
Treatment Approach
The AEOI is currently focused on treating epispadias and bladder exstrophy; cloacal exstrophy is not yet part of the mission.
This program is unique because it gives comprehensive training to pediatricians, surgeons, nurses, and mental health professionals so that all parts of exstrophy care are addressed. This including preoperative patient assessment and family counselling, intraoperative techniques, postoperative pain management, and patient advocacy, among others.
Surgical treatment for exstrophy includes a series of major surgical procedures often spread over 10 years:
- Bladder Closure with Pelvic Osteotomies (4+ week inpatient stay required).
- Epispadias Repair (for males).
- Continence Procedures such as bladder neck reconstruction and other continence procedures.
Challenges in Uganda
Who We Are Helping
- People in Uganda and other E. African nations born with Bladder Exstrophy and Epispadias.
- Patients and families facing stigma, patients with limited access to education and jobs, and financial barriers to surgery.
- Ugandan healthcare providers seeking training in advanced BEEC medical, nursing, and surgical care.
Key Challenges
- Limited medical resources: Only 5 pediatric surgeons, 1 pediatric urologist, 0 pediatric orthopedic surgeons, and 3 pediatric anesthesiologists in Uganda.
- Social stigma and exclusion: Many children with BEEC face shame, ostracization, and limited educational and professional opportunities.
- Lack of multidisciplinary BEEC care: No local, state-of-the-art treatment options available.
Goals in Uganda
A-BE-C aims to create a sustainable, high-quality medical program for bladder exstrophy in Uganda by:
- Training Ugandan healthcare providers in advanced surgical and nursing techniques.
- Establishing a stable, yearly presence of pediatric urologists and nurses.
- Developing a self-sufficient model of care.
- Providing access to surgery and follow-up care.
Our Commitment
- Implementing a structured training curriculum with increasing responsibilities for local providers.
- Ensuring year-round availability of BEEC specialists for consultations.
- Conducting two-week medical missions annually for six to eight years.
- Hosting family education days for patients and caregivers.
Program Approach & Output
Surgical Treatment & Training
- Conduct bladder closure surgeries, epispadias repairs, and urinary continence procedures.
- Train Ugandan surgeons and nurses about the nuances of BEEC care.
- Establish yearly surgical missions and a sustainable BEEC care model.
Community Support & Awareness
- Educate local mental health professionals about how to address the unique challenges people with BEEC face.
- Organize support groups for families.
- Create awareness campaigns to reduce stigma.
- Provide social support and pre/post-operative care.
International Partnerships
- Collaborate with EMERGENCY Children’s Surgical Hospital in Entebbe, Uganda to provide BEEC care for many regions in East Africa.
- Invite surgeons from other E. African nations to participate in their patient’s care and to learn about advanced BE care
Impact & Future Goals
Progress So Far
- 4 missions completed between 2019 and 2024.
- 50 patients receiving specialized BE care including:
- 10 primary bladder closures
- 10 epispadias repairs
- 6 continence procedures
- Outstanding progress in training Ugandan pediatric and orthopedic surgeons and showing Ugandan nurses the nuances of exstrophy nursing care.
- Regular didactic seminars with pediatric surgeons from Kenya, Ethiopia, Burundi, Tanzania, South Africa, Ghana, and other participating African nations.
Long-Term Sustainability
- Our goal is to create a self-sufficient Ugandan medical team capable of handling BEEC cases independently.
How You Can Help
Our Needs
To sustain this initiative, we require:
- Medical Supplies: Latex-free supplies, medications, urostomy appliances, urinary catheters, and specialized orthopedic materials.
- Funding: Support for travel, training, and in-country patient care.
- Volunteers: people willing to spread awareness of this program.
Your Questions
We welcome any questions about our mission, how you can help, or how to get involved. Together, we can bring the highest standards of treatment, care, and support to individuals affected by bladder exstrophy in Uganda and other African nations.
Key Team Members
- Pam Artigas – A-BE-C Director, parent of a person with BE.
- Anthony Schaeffer, MD, MPH – Pediatric urologist at University of Utah Health and the Medical Director of A-BE-C (>15 years of exstrophy experience).
- Janet Gibson – A-BE-C volunteer & Uganda liaison.
- David Mukisa, B. Pharm, MPS – Ugandan program coordinator.
- Ranjiv Mathews, MD – Pediatric urologist (>30 years of exstrophy experience).
- Marlo Eldridge, DNP, MSN, CPNP – Exstrophy nurse practitioner (>25 years of exstrophy experience).
- Emily Haddad, LCSW – Licensed clinical social worker, behavioral health advocate.
- Paul Sponseller, MD – Pediatric orthopedist, expert in pelvic osteotomies for BEEC.
- Deborah Schwengel, MD – Pediatric anesthesiologist, expert in post-op BE pain management.