Jemima Mellerio, MD, an EB specialist at St John’s Institute of Dermatology and St. Thomas Hospital in London, recommends these protocols for screening and management of urinary system issues.
For RDEB and JEB patients
Twice a year:
- Blood tests for urea (BUN) and electrolytes
- Blood pressure check
If these are not normal:
- Urine microscopy
- Urine culture
- renal ultrasound
- DMSA scan, which evaluates the size, shape and position of the kidneys; it also is used to detect scarring in caused by frequent infections
- Functional tests such as a MAG 3 (diagnostic imaging)
For JEB patients
- Renal ultrasound
If this is not normal:
- DMSA scan
- If this shows scarring or discrepancy, consider functional tests such as a MAG 3
Additional areas of concern
If your medical provider suspects an obstruction, a renal ultrasound is recommended.
If your medical provider suspects vesico-ureteric reflux, a MAG 3 or a micturating cystourethrogram (MCU) may be ordered.