How is epidermolysis bullosa treated?

How is epidermolysis bullosa treated?

There is no cure for EB. Treatment helps:

• Prevent blisters from forming.
• Care for blisters and skin so that complications don’t occur.
• Treat nutritional problems that may occur due to blisters in the mouth or esophagus.
• Manage pain.

To avoid damage and friction that may cause the skin to blister or tear, doctors recommend:

• Wearing soft, loose-fitting clothing made out of natural fibers. Turn clothing inside-out to avoid contact with seams.
• Avoiding getting too hot; keep rooms at a comfortable and even temperature.
• Staying out of the sun or wearing sunscreen.
• Applying special bandages to protect the skin — use nonadhesive (doesn’t stick to skin) bandages and tape and rolled gauze.

To treat blisters, your doctor may recommend:

• Treating wounds daily with ointments.
• Using medicated bandages to help blisters heal and prevent infection.
• Taking medications to manage pain.

To treat infections, your doctor may recommend:

• Taking antibiotics by mouth or applying antibiotic cream.
• Using a special wound covering for sores that don’t heal.

To prevent nutrition problems due to difficulty eating because of blisters in the mouth or esophagus, your doctor may recommend:

• Using a baby bottle with a special nipple.
• Feeding your baby with an eyedropper or syringe.
• Adding liquids to mashed foods to thin them down, making them easier to eat.
• Eating a diet of soft foods, such as soups, mashed foods, pudding and applesauce.
• Serving foods at a warm (not hot) temperature.
• Seeing a dietitian to monitor your special nutrition needs.

For severe cases of EB, you may need surgery. Surgery will widen the esophagus (the tube leading from the mouth to the stomach) if blisters and scarring have caused it to narrow. Inserting a feeding tube directly into the stomach, bypassing the esophagus entirely, is another option for some people. Surgery also separates fingers or toes that have fused from the blisters.