Epidermolysis bullosa

During the first 1 to 2 years of life, it would be prudent to have any child with generalized epidermolysis bullosa (EB) seen at least every 6 months by a pediatrician or dermatologist. All of these children need to be monitored for possible bacterial infection and failure to thrive, especially during the first year of life.

Those with junctional EB should be closely monitored during the first 6 years of life for possible tracheolaryngeal involvement.

Once a child with recessive dystrophic EB (RDEB) reaches early adolescence, full-body skin exams should ideally be performed yearly, to screen for possible early squamous cell carcinomas.

There are, as yet, no established guidelines relating to the frequency with which blood counts or other laboratory tests should be obtained, or whether RDEB patients should be monitored for possible early cardiomyopathy or renal failure, although many experts recommend routine testing for the latter in those subtypes at highest risk.