General Principles of Management
- Avoid instrumentation and surgery; when unavoidable, use the smallest, most flexible instruments
- Urethral catheters are tolerated short-term
- Supra-pubic catheters are well-tolerated longer term
- Avoid constipation and dehydration
- Encourage toilet training at a normal age
Any EB patient, regardless of the type, should be referred for a urological evaluation and treatment if experiencing symptoms of urinary difficulties.