Epidermolysis bullosa

Parents should be instructed how to most safely and effectively handle, bathe, sterilely dress, and protect their child's skin, so as to minimize the risk of further blisters and secondary infection. It should be reinforced that blisters should be sterilely drained, to alleviate pain.

Although avoiding excessive physical insults to the skin should be stressed (including maintaining a cool, clean home and school environment), parents should equally be encouraged to allow their children to participate in as many mainstream activities as possible, so that the children learn how to socially interact with their peers. However, home schooling may be necessary for a few severely affected children.

Careful wrapping of fingers should be considered as part of the daily preventive management of those children at risk for web formation. Nutritional counseling should be provided to optimize intake and to promote growth and development. Parents need to be educated about signs suggestive of the early systemic complications, including sepsis, renal disease or failure, upper airway or esophageal compromise, and cardiomyopathy, and urged to consult with their child's physician if they are concerned.

All children with recessive dystrophic EB >10 years of age are told to seek dermatology consultation for any skin lesion that is taking longer than usual to heal, and the parents need to be educated about the risk of squamous cell carcinoma arising in such a clinical setting.