Cystomanometer vs We The BE

A portable device capable of measuring bladder pressure (“Cystomanometer”) is being used for research in pediatric patients with neurologic conditions. This device is paired with an iPhone to allow bladder pressure measurements along with the time and date to be collected and stored. This app uses some libraries that offer integration with the Health app but there are not categories to store bladder pressure specifically yet. No Health data is currently used.

We the BE is a free educational companion for families, patients, and caregivers living with bladder exstrophy - built with the clinicians who treat it. Bladder exstrophy, cloacal exstrophy, and epispadias are rare. Reliable information is scattered, inconsistent, and hard to trust. We the BE, bring it into one place, in plain language, reviewed by specialists. ASK THE CLINIC Ask a question and get an educational answer grounded in the clinic's own video library. Every answer cites its sources and links directly to the exact moment in the video, so you can always see where the information came from. Conversations are not saved to your device. YOUR CONDITION, EXPLAINED Clear overviews of bladder exstrophy, cloacal exstrophy, and epispadias, what they are, how they are managed, and what to expect at each stage. TREATMENT AND PREPARATION GUIDES Step-by-step guidance on procedures and how to prepare for them, so appointments and hospital stays hold fewer surprises. EXPERT VIDEO LIBRARY Watch leading clinicians explain diagnoses, surgical approaches, and day-to-day care, organized by topic and by specialist. MEDICAL PRODUCT GUIDES Practical information on catheters, stents, and the other supplies families actually use. ASK A SPECIALIST Submit your questions and receive answers reviewed by medical professionals. Answers are shared anonymously, so every question helps the whole community. COMMUNITY FORUM Connect with other families who understand. Share experiences, ask questions, and find people further along the same path. RESOURCES AND REFERENCES Trusted documents, FAQs, and source references organized by topic and life stage. We the BE is for education only. It does not provide medical advice, diagnosis, or treatment, and it is not a substitute for care from your own medical team. Always talk to your clinician about your situation. If you have a medical emergency, call your local emergency number. 'We the Be' is sponsored by The Black Foundation and was developed by the team at OKC Kids Urology www.okckidsurology.com in partnership with Association for Bladder Exstrophy Community (A-BE-C) www.bladderexstrophy.com.