Epidermolysis bullosa (EB) makes ordinary touch painful — some babies are born with skin so fragile it blisters at the slightest rub.

This tag page explains what EB is, how it shows up, and practical steps to manage it day to day.

What is EB?

EB is a group of inherited disorders that weaken the proteins that hold skin layers together. When those proteins are faulty, skin and mucous membranes blister or tear from minor friction. Severity ranges from mild blistering on hands and feet to widespread wounds that affect eating, breathing, and growth.

Common types are EB simplex, junctional, and dystrophic EB. EB simplex usually stays in the outer skin and often improves with age. Junctional and dystrophic forms are often more severe; dystrophic EB can cause scarring, fused fingers (mitten deformities), and a higher cancer risk over time.

What causes EB? Mutations in genes that make structural proteins — like keratins, laminin 332, or collagen VII — lead to EB. It's passed down in different patterns, either dominant or recessive. Diagnosis comes from clinical signs, skin biopsy with immunofluorescence, and increasingly, genetic testing to pinpoint the exact mutation.

How is EB managed?

There's no universal cure yet, but good care prevents complications. Wound care is central: gentle cleansing, non-adhesive dressings, and careful blister drainage by trained carers. Infection control, pain management, proper nutrition, and physical therapy to protect joints matter a lot. Many people need a team: dermatologists, geneticists, dietitians, dentists, and wound nurses.

Practical tips that help: wear soft, seamless clothing; pad hard surfaces; choose breathable shoes; use silicone-based tape only when needed; cut toenails and fingernails short to avoid accidental tears. For blisters, sterile needle drainage and protective dressings cut discomfort and lower infection risk. High-protein, high-calorie meals and supplements support healing if weight or growth is a concern.

Watch for complications: chronic wounds, anemia, dental problems, eye issues, and in severe dystrophic cases, an increased risk of aggressive squamous cell carcinoma. Regular follow-up and early treatment of infections reduce serious problems.

Where is research now? Promising work includes gene therapy, protein replacement, topical treatments, and stem cell approaches. Small clinical trials have shown patches of progress, but access and long-term safety still need time. If you follow EB news, check reputable clinical trial registries and specialist centers.

When to call your team? If a wound shows spreading redness, fever, unusual pain, heavy bleeding, or loss of function, get urgent care. Also ask about genetic counseling for family planning.

Resources that help: patient groups, specialist centers, and charity foundations offer wound care guides, equipment suppliers, and peer support. Small steps in daily care make a measurable difference in comfort and long-term health. You don't have to manage EB alone.

Talk openly with your care team about new treatments, realistic goals, and quality of life measures. Practical aids like adaptive utensils, custom clothing, and housing tweaks often improve daily living. Keep copies of medical records and wound photos for clinic visits. Small changes add up, and good care pays