Whereas bathing is an activity of daily living (AOL) that most of us take for granted, this is certainly not true for individuals with EB. Showering may anecdotally be quite painful for some patients with EB due to the pressure of the water on open wounds. Hence, bathing was recommended, particularly in the era of dressings that would adhere to the wounds, in order to soak them off. With more modern nonstick dressings, some patients prefer to have “dry dressing” changes and spraying of their skin; one advantage of this is that bacteria that might colonize one wound may not spread from wound to wound. In the United Kingdom, the Dystrophic Epidermolysis Bullosa Research Association (DebRA) nurses advocate this method for newborn babies as they believe that it is easier for parents to change one limb at a time and that the newborns are less likely to kick the raw skin off the opposite limb, for example, when they are agitated. There has never been a randomized trial of bathing/showering or dry dressing changes in EB.

Despite the significant pain associated with bathing there is very little in the way of research to document or quantify how this impacts EB patients. Most of the information in the literature addresses overall AOL, or some therapeutic modality to improve pain with associated procedures, wound care, or dressing changes.

In 2004, Fine and colleagues documented, through the United States–based National EB Registry, the percentage of EB children reported to be totally independent versus dependent for major AOL (toileting, feeding, bathing, dressing, grooming, and walking). Each activity was subcategorized based on subtype of EB (simplex, junctional, dominant dystrophic, and recessive dystrophic). With regard to bathing, 100% of dominant dystrophic and 46.7% of recessive dystrophic patients felt that they were totally independent for AOL, whereas 95.8% of simplex and 65.4% of junctional EB patients considered themselves independent. Not surprisingly, those who reported being dependent on others for AOL scored highest for the more severe forms of EB (26.9% and 26.7% for junctional and recessive dystrophic, respectfully), whereas those with the more mild forms were least dependent (2.1% for simplex). Of note, no patients with dominant dystrophic EB reported dependency.

Other reports addressing bathing are mostly related to the safety of sedation or anesthesia. In 1999, Chiu and colleagues documented the safety of midazolam, along with cognitive behavior techniques, 20 minutes before bathing in a 9-year-old male with nonlethal junctional EB. In 2007, Wu showed that propofol and propofol with ketamine was safe and efficacious in 2 patients with “severe dystrophic EB” who required whirlpool baths for wound care.

In their EB center in Denver, Colorado the authors learned from the guest editor of this issue, Professor Murrell, a very simple treatment to decrease the pain associated with bathing. In Australia, it is the standard of care to recommend the addition of salt to bath water. Professor Murrell first learned this several years ago from Anna Kemble-Welch, Director of DeBRA New Zealand (personal communication, 2009). In their Denver clinic the authors recommend adding 1 pound of salt, whereas Professor Murrell has had excellent results with the addition of 1 kg per standard adult bath size, to be isotonic with normal saline in the body. The authors are currently working with Professor Murrell to quantify this change using a validated quality of life survey.

Although there are very few data regarding bathing and EB, the simple addition of pool salt to the bath water can dramatically decrease the pain and anxiety of bathing.