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Epidermolysis bullosa: the types, the signs, what causes it, getting a diagnosis, treatment, and living with it
For families of a baby whose skin blisters or tears at the slightest rub; for anyone just told it is epidermolysis bullosa; for adults whose blisters began later; and for the people who care for them. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the NIH) says epidermolysis bullosa is a group of rare diseases that make the skin fragile, so it blisters and tears easily; that most of it is inherited; and that there is no cure, but the symptoms can be treated. This page passes on, by name, what NIAMS says: the types and the signs; what causes it and how it is passed on; the tests; pain and itch, bandages, infection and the team; and protecting the skin, eating, moving and coping. It builds the words to say to a doctor or nurse, and prints a card to keep.
Right now
- Trouble breathing, or anyone in danger right now: call 911 (ours).
- A wound with more redness, more pain, red streaks, pus, or a fever: contact the doctor right away (NIAMS). Someone cannot eat or drink enough: call the doctor the same day, or go to an emergency room if you cannot reach them (ours).
- Thinking about suicide: call or text 988, any time (ours). See Depression.
More help
- Skin and the body: A rash, an itch, or skin: find the right page · Pemphigus · Child health · Dental care · Chronic pain.
- How you feel: Depression · Caring for someone.
- Care and costs: Symptom diary · Medicines list · When you need a doctor and can’t pay · Get ready for the appointment.
- In a crisis: Help right now (988, 911). All our free tools.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor, nurse or therapist has reviewed it. The facts were read on October 16, 2026 on NIAMS’s Epidermolysis Bullosa page, both parts: Overview, Symptoms, & Causes and Diagnosis, Treatment, & Steps to Take (NIH, last reviewed September 2023), and its shorter Spanish twin, Epidermólisis ampollosa (December 2023). Ours: 911 for trouble breathing or anyone in danger; 988 for thoughts of suicide; calling the doctor the same day, or going to an emergency room if you cannot reach them, when someone cannot eat or drink enough; telling a baby’s doctor right away and asking the team to show you how to handle the skin and change bandages; not stopping or changing a prescribed medicine on your own; asking a genetic counselor what results mean for your family and how often the skin should be checked; notes and dated photos; asking what each treatment would change and what it costs; and the order of the steps. What we left out: any brand or dose, any advice on draining or popping blisters (NIAMS gives none), how long people with it live (the pages read do not say), and NIAMS’s research pages. This page saves nothing and loads no trackers.