Are there any treatments for the mechanobullous disorders?

There are no specific treatments for this group of disorders. The current standard of care for these infants is strict wound care and infection control. Nonadherent dressings and padding are used to help blister heal and decrease trauma to the skin. Bathing can be quite painful for these children, especially for those that have the more severe forms of EB. Adding one pound of pool salt to a full tub of water has been found to help alleviate the pain with bathing. In variants with oral manifestations, such as junctional EB and recessive dystrophic EB, meticulous oral hygiene with close dental follow-up is essential. Capping, crowns, and restorations can be helpful. Blenderized food is necessary early on for patients with recessive dystrophic EB to help minimize trauma to the esophagus and prevent esophageal webbing. Hand deformities in dystrophic EB can be surgically corrected, but the recurrence rate is high.


There is extensive research in the area of gene therapy for the various forms of epidermolysis bullosa. When dealing with a newborn with suspected EB it is best to contact one of the national organizations that deals with EB, such as the Dystrophic EB Research Association (www.DebRA.org), which can provide both clinical as well as family support. In addition, one can contact one of the five large multidisciplinary EB clinics in North America (Stanford University, Stanford, CA; Children’s Hospital, Aurora, CO; Cincinatti Children’s Hospital, OH; Hospital for Sick Children, Toronto, Canada; and Columbia University, New York).