Finding the right information and support can make a meaningful difference when navigating bladder exstrophy.
These books have been thoughtfully created to educate, encourage, and support individuals and families affected by bladder exstrophy and related conditions. Written by medical professionals, advocates, and members of the exstrophy community, each resource reflects both clinical expertise and real-world experience.
Whether you are a parent seeking guidance, a patient looking for reassurance, or a healthcare professional expanding your knowledge, these resources are designed to inform, empower, and foster connection.
Every purchase supports A-B-E-C’s mission to raise awareness, provide trusted education, and strengthen the bladder exstrophy community worldwide.
A Story About You was written for the young child (aged 3 to 6) who is becoming curious about bladder exstrophy and their physical differences. With delightful illustrations and age-appropriate language, A Story About You introduces the child to bladder exstrophy using the approach that all of our bodies are unique and special. The book explains, in simple terms, how the bladder works, what exstrophy is, and the possibility of future surgery as the child grows. By design, the book is general, giving caregivers the opportunity to tailor discussion to the child’s specific circumstances.
A Story About You lays the groundwork for good conversation and the development of healthy self image. Help your child learn that BE is something that makes them unique and special!
A Story About You can also be shared with siblings or trusted friends to help them understand their loved one’s differences.
Available in Boy and Girl versions.
Bladder Exstrophy and Epispadias: A Compendium unites world-renowned experts to provide an evidence-based roadmap for managing the bladder exstrophy-epispadias complex (BEEC), covering everything from prenatal diagnosis to complex surgical reconstruction.
A Resource for Families and Clinicians Alike
While this text was meticulously written for the medical community, it serves as an invaluable resource for families navigating a BEEC diagnosis. By providing a clear window into the latest surgical considerations, expected outcomes, and long-term management strategies, it empowers parents and patients with the knowledge needed to advocate for the highest standard of care.
The chapter, ‘Advocacy for the Exstrophy Community: Empowering and Encouraging the Patient and Family’, was authored by Executive Director, Pamela Artigas, and Advisory Board Member, Emily Haddad. As the chapter highlights:
“The bladder exstrophy-epispadias complex presents a multitude of medical and psychosocial challenges… individuals are at risk for being isolated. To mitigate these risks, stakeholders must prioritize avenues for support—including international partnerships, school interventions, and global advocacy.”
This work underscores the importance of the “Beyond Surgery” philosophy, ensuring that success is measured not only by clinical results in the operating room but by the long-term empowerment and quality of life for every individual and their family.
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Choosing the right resource depends on where you or your family are in your journey with bladder exstrophy. Each book is designed to meet different needs, from early childhood understanding to in-depth medical knowledge.
Best choice: A Story About You and Your Special Bladder
This book is ideal for young children who are beginning to ask questions about their bodies. It uses simple language and illustrations to help children understand bladder exstrophy in a positive and reassuring way.
Helps with:
Best choice: Bladder Exstrophy and Epispadias: A Compendium
This resource provides a deeper understanding of the condition, including treatment options, long-term care, and what to expect over time.
Helps with:
Best choice: Bladder Exstrophy and Epispadias: A Compendium
This comprehensive, evidence-based resource is designed for clinicians but also valuable for families seeking a more detailed understanding of bladder exstrophy.