Epidermolysis bullosa (EB) is treated with a combination of careful wound care, pain management, nutritional support, and in some cases, newer therapies that target the genetic root of the disease. There is no single cure for all forms of EB, but the treatment landscape has shifted significantly in recent years with the first FDA-approved therapies specifically designed for EB wounds. Daily management still centers on protecting fragile skin, preventing infection, and addressing the complications that arise in more severe subtypes.
Daily Wound Care and Dressing Changes
The foundation of EB treatment is meticulous wound care. Because the skin blisters and tears from minimal friction, the goal is to keep wounds clean, moist, and protected without causing further damage when dressings are removed. Cleaning is done gently with saline, water, or mild antimicrobial cleansers. Dilute vinegar solutions (white vinegar diluted to 0.25% to 1.0%) or very dilute bleach baths (5 to 10 milliliters in 5 liters of water) can help reduce bacteria on the skin.
Dressings need to come off without ripping new skin. Silicone-coated foam dressings are the standard because they lift away cleanly. Contact layers made of soft, inert material sit directly on the wound and allow removal without tearing healing tissue. Modified absorbent pads with a perforated plastic film also prevent sticking while absorbing fluid from weeping wounds. For many families, dressing changes happen daily or every other day and can take anywhere from 30 minutes to several hours depending on how much skin is affected.
Managing Pain During and Between Dressing Changes
Pain is one of the most challenging aspects of living with EB, and it comes in layers. There is the constant background pain from open wounds, the sharp pain of dressing changes, and the unpredictable flares when new blisters form.
For chronic background pain, long-acting pain medications provide a steady baseline of comfort. Medications originally developed for nerve pain, like gabapentin, and certain antidepressants are also used to manage the persistent skin pain that standard painkillers don’t fully reach. When sudden flares break through that baseline, fast-acting medications delivered through the lining of the mouth or nose offer rapid relief without needing to swallow a pill, which matters because many people with severe EB have painful mouth and throat sores.
Dressing changes are often the most dreaded part of the day. Anti-anxiety medications given beforehand help with the fear and anticipation, while pain relievers timed to peak during the procedure make the process more tolerable. For children especially, this combination of calming and pain-relieving medications can make a significant difference. Topical lidocaine gel applied directly to particularly painful wounds also provides localized numbing.
Treating Itch
Itching in EB can be relentless and is often as distressing as pain. Antihistamines are a first-line option, with sedating versions used at bedtime to help with sleep and non-sedating versions used during the day. When antihistamines alone aren’t enough, gabapentin and pregabalin, the same medications used for nerve pain, can significantly reduce itch. This dual benefit makes them particularly useful for people dealing with both symptoms.
Preventing and Treating Skin Infections
Open wounds are constantly at risk of infection. Warning signs include warmth around a blister, pus, increasing redness, or red streaks extending away from the wound. The dilute vinegar and bleach baths used for routine cleaning also serve a preventive role by lowering the bacterial load on the skin. When infection does set in, prescription antibiotics are needed. Rotating between different topical antibiotics helps prevent bacteria from developing resistance, which is a real concern when wounds are chronic and require repeated treatment.
Nutritional Support and Feeding
EB places enormous nutritional demands on the body. Chronic wounds require extra energy and protein to heal, much like a burn injury does. Children and adolescents with EB generally need 100% to 150% of the calories recommended for their age, and 115% to 200% of the standard protein requirement. Meeting those targets through normal eating is difficult, especially when mouth blisters, esophageal scarring, and swallowing pain limit what someone can eat comfortably.
For people with severe forms, particularly recessive dystrophic EB, a feeding tube placed directly into the stomach (a gastrostomy tube) is often necessary. More than half of patients with recessive dystrophic EB eventually need one. Studies show that patients fed through a gastrostomy averaged about 180% of normal protein intake and 129% of normal calorie intake, levels that allowed catch-up growth. Starting tube feeding before malnutrition sets in, and ideally before age ten, gives the best chance of supporting normal growth and pubertal development.
Esophageal Dilation
In dystrophic EB, repeated blistering and scarring inside the esophagus can narrow the swallowing passage over time. When this narrowing causes worsening difficulty swallowing, a procedure called esophageal dilation gently stretches the scarred tissue to reopen the passage. This is done as needed based on symptoms and may need to be repeated as scarring recurs.
FDA-Approved Therapies for EB Wounds
Two targeted treatments are now available specifically for EB, both representing major milestones for a disease that previously had no approved therapies beyond supportive care.
Gene Therapy Gel for Dystrophic EB
Vyjuvek is a gene therapy gel approved for wounds in patients with dystrophic EB caused by mutations in the COL7A1 gene. The gel contains a modified, non-replicating herpes simplex virus that delivers a working copy of the gene for type VII collagen, the protein that normally anchors the outer layer of skin to the layers beneath it. Applied topically to wounds once a week in evenly spaced droplets about one centimeter apart, the therapy enables the wound cells to produce functional collagen VII and promote healing.
Gene-Corrected Skin Grafts
The FDA approved gene-corrected skin grafts in April 2025 for severe recessive dystrophic EB, which affects roughly one in every 500,000 people. The process is personalized: a small biopsy of unwounded skin is taken from the patient, and the cells are sent to a lab where a corrected version of the collagen VII gene is introduced. The engineered cells are then grown into sheets of skin about the size of a credit card and grafted onto wounds. A phase 3 trial in 11 patients showed significantly better healing, less pain, and less itching in grafted wounds compared to untreated wounds.
Birch Bark Gel for Junctional and Dystrophic EB
Filsuvez is a topical gel made from birch tree compounds, approved for treating wounds in patients with junctional or dystrophic EB who are 6 months of age or older. It promotes the skin’s natural wound-healing process, helping wounds close faster. Unlike the gene therapies, it doesn’t target the underlying genetic defect but instead supports re-epithelialization, the regrowth of the skin’s outer layer.
How Treatment Differs by EB Subtype
EB is not one disease but a group of related conditions, and the treatment focus shifts depending on which type someone has.
In EB simplex, blistering happens within the outermost skin layer and is often concentrated on the hands and feet. Treatment focuses on reducing inflammation and preventing blisters in high-friction areas. An anti-inflammatory cream derived from rhubarb root (diacerein) reduced blister counts by more than 40% in a small clinical trial. Researchers are also testing a topical treatment aimed at dialing down the production of the faulty proteins that cause cell fragility in this subtype.
Junctional EB involves blistering at the junction between the outer and inner skin layers, and it can range from mild to life-threatening. Gene correction approaches using skin grafts grown from the patient’s own corrected cells have been successful in individual cases. Because junctional EB can also affect the airways and other mucosal surfaces, management often extends well beyond skin care.
Dystrophic EB, caused by mutations in the collagen VII gene, has received the most therapeutic development because all its forms trace back to a single gene. This makes it a strong candidate for gene therapy, and all three FDA-approved treatments described above apply to dystrophic EB. A pilot study also found that a topical antibiotic (gentamicin), applied to wounds in five patients with dystrophic EB, increased collagen VII production in the skin, suggesting it may have benefits beyond infection control.
The Role of Multidisciplinary Care
EB affects far more than the skin. Blistering can involve the eyes, mouth, esophagus, hands, and feet, and chronic wounds raise the long-term risk of skin cancer, anemia, and nutritional deficiency. Comprehensive care typically involves dermatologists, pediatricians, wound care nurses, occupational therapists, nutritionists, and gastroenterologists working as a coordinated team. Specialized EB centers, though limited in number, offer this kind of integrated care and are the best resource for managing the full scope of the disease. For families who don’t live near a center, telemedicine and coordination with local providers guided by an EB specialist can help fill the gap.