Bladder Exstrophy Book Shop
These books are thoughtfully created to educate, encourage, and support individuals and families impacted by bladder exstrophy and related conditions. Written by medical professionals, advocates, and members of the exstrophy community, each resource reflects a deep understanding of the lived experience. Whether you’re a parent looking for guidance, a patient seeking reassurance, or a professional expanding your knowledge, these books are designed to inform, empower, and foster connection.
Every purchase helps support the A-BE-C’s mission to raise awareness, provide trusted resources, and strengthen our community through education and advocacy.
A Story About You and Your Special Bladder
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.
If you face financial hardship and would like a copy of the book, please contact us.
Bladder Exstrophy and Epispadias: A Compendium
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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