Managing dystrophic epidermolysis bullosa (DEB)

Current management

To manage DEB, healthcare teams focus on guiding supportive care and watching for and treating complications.

Supportive care includes:

Wound management

Bandages, also called dressings, are meant to prevent infection and protect the skin from damage and trauma while it is healing

Anti-itch treatments may include topical steroids for severe itch

Bathing and wound cleansing

Antimicrobial, vinegar, or salt soaks are sometimes used in the bath or shower

Pain control

Pain medication may be recommended for people who need it

Managing complications

DEB can have a broad range of complications. Management may include:

Infection control
Topical or oral antibiotics may be prescribed to prevent or stop a skin infection.

Squamous cell cancer
Surgery, chemotherapy, or radiotherapy may be used for treatment.

Narrowing of the esophagus
A procedure may be used to open up the narrowing of the throat.

Mitten deformity (“mitten” hands)
Surgery may be required to separate fingers or toes.

Iron supplements, intravenous iron, or blood transfusions may be used.

Lack of proper nutrition/growth delays
A feeding tube may be used to provide needed nutrition.

Eye care
Care may include preventing dryness, treating inflammation, and avoiding injury.

Knowing if you or a loved one is living with DEB is critical to accurate care.

Future treatment

Today, there are no treatments to address the underlying cause of DEB—lack of working type VII collagen protein due to mutations in the COL7A1 gene.

Gene therapies that address the underlying cause of DEB—mutations in the COL7A1 gene—are in development.

Knowing if it’s DEB could open potential future treatment options to you or your loved one.

Testing for DEB

Do you think you or someone you love may have DEB?

Support and Resources

You are not alone on your DEB journey

Not all blisters are the same. Could yours be DEB? Ask your doctor about a genetic test for DEB