Clinical Management of EB

• Prevent shear and friction injuries from the first touch.
• Always lift patients rather than slide.
• Infants should not be fully undressed for exams.
• Use padding or tubular gauze to protect high-friction areas.

• Select and secure dressings without adhesives.
• Never apply adhesives directly to the skin.
• Use non-adherent dressings (i.e., EB-Friendly Dressings List).
• Remove adhesives from monitors or apply over silicone/hydrogel barriers.
• Add padding over high-risk pressure points.

EB blisters are not self-limited; once they form, they often continue to enlarge unless they are drained and protected. Follow these step-by-step recommendations for safe lancing here. 

Guidelines for Safe Blister Drainage

• Wash hands and assemble supplies.
• Use a sterile needle or lancet to lance tense blisters over dime size.
• Gently push the fluid to one corner of the blister.
• Prick 1–2 holes on the side (not top) of the blister.
• Drain fluid with gauze or Q-tip, keeping the blister roof intact.
• Reuse the lancet only if there are no signs of infection (white or cloudy drainage).
• Apply ointment → non-adherent dressing → rolled gauze or netting to secure.

🚫 DO NOT USE ADHESIVE TAPE OR REGULAR BANDAIDS. In an incident where adhesives have been applied, leave in place until patient is stable. Use adhesive removal spray or emollient to gently loosen and carefully remove adhesives to minimize trauma. Alternatives include Vaseline®, mineral oil, coconut oil, normal saline, baby oil, or tap water.

• Use gentle technique to avoid trauma.
• Cleanse by dabbing, not rubbing.
• Place tourniquets over gauze or bandage.
• Give vaccines as usual; apply light pressure, not massage.

Refer to Emergency Management for EB for detailed recommendations.

• Disperse cuff pressure to protect fragile skin.
• Wrap gauze or clothing under the cuff; never apply directly to skin.

Refer to Emergency Management for EB for detailed recommendations.

• Recognize and treat infection promptly.
• EB wounds are prone to bacterial infection (Staph, Pseudomonas).
• Look for redness, pus, odor, honey-colored crusts, fever, or chills.
• Culture when suspicious; systemic cases require labs and blood cultures.

• Control discomfort while avoiding opioid complications.
• Manage acute pain with analgesics; limit long-term narcotics.
• Antihistamines can reduce itching.
• Prevent constipation if opioids are used.

• Address swallowing issues and maintain high-calorie intake.
• Dysphagia, strictures, and constipation are common.
• Dietitian involvement is essential.
• Encourage soft, high-protein foods and supplements.
• Assess the full esophagus; balloon dilatation may be needed.

• Monitor for chronic anemia and nutrient loss.
• Iron supplementation is often required.
• Check selenium and carnitine levels when indicated.

• Reduce friction through soft, seamless garments.
• Avoid seams, tags, and tight waistbands.
• Choose loose, padded shoes with rubber soles.
• Pad diapers and waistbands.

• Keep skin cool and dry to prevent new blistering.
• Avoid heat and humidity.
• Use body-temperature or cooler water.
• Maintain air-conditioned environments when possible.
• Pad diapers and waistbands.