Epidermolysis Bullosa (EB), also known as Butterfly Skin, is a group of rare conditions that can make the skin and, in some cases, internal body linings very fragile. Everyday friction, rubbing, pressure, or minor injury can cause painful blisters, wounds, and skin damage.
EB affects everyone differently. With the right support, understanding, and inclusive environments, many people with EB live active and fulfilling lives. Experiences vary widely and may change over time.
Epidermolysis Bullosa (EB) can be non-apparent
Around 500,000 people worldwide are estimated to be living with EB (DEBRA International / DEBRA UK)
Symptoms often begin at birth or during infancy, though milder forms may appear later (NIAMS)
EB is genetic and cannot be caught from another person (DEBRA International / NIAMS)-
EB affects all genders and people of all racial and ethnic backgrounds (NIAMS)
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Blisters can affect more than the skin including the mouth, eyes and digestive system (NIAMS / EB Research Network)
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Experiences vary widely depending on the type of EB and the person (DEBRA International)
What is Epidermolysis Bullosa (EB)?
Epidermolysis Bullosa (EB), sometimes known as Butterfly Skin, is a group of rare genetic conditions that affect the proteins that help hold layers of the skin together. This means the skin can be very fragile and may blister, tear, or wound easily.
For some people, EB mainly affects the skin. For others, it may also affect areas such as the mouth, throat, digestive system, eyes, nails, or other parts of the body.
EB is not a reflection of a person’s choices, lifestyle, or character. Many of the challenges people face are linked not only to skin fragility, pain, or wound care, but also to environments, systems, and attitudes that are not always inclusive, accessible, or understanding.
What causes Epidermolysis Bullosa (EB)?
EB is usually caused by changes in genes that affect how the body makes proteins needed to keep skin layers strong and connected. These genetic changes mean the skin is more likely to blister or tear when it experiences friction, rubbing, or pressure.
- Inherited genetic changes may be passed through families
- Some genetic changes can happen for the first time in a person
- Different types of EB can follow different inheritance patterns
- EB is not contagious and cannot be caught through touch or contact
Experiences vary considerably, and the same type of EB can affect people differently.
Types of Epidermolysis Bullosa (EB)
Several forms of EB have been identified. The main types include:
- Epidermolysis Bullosa Simplex (EBS) – often causes blistering in the outer layer of skin and is the most common form
- Junctional Epidermolysis Bullosa (JEB) – can affect the skin and other body linings, including the mouth and digestive system
- Dystrophic Epidermolysis Bullosa (DEB) – can cause blistering, wounds, scarring, and changes to nails or fingers and toes
- Kindler EB – can involve blistering, skin fragility, sensitivity to sunlight, and changes in skin texture
Healthcare professionals usually focus on the individual’s experiences, support requirements, and the impact on daily life, rather than assuming all people with EB are affected in the same way.
Common symptoms and signs
Experiences can vary and may change over time. They are often described in three areas:
Skin-related experiences:
- Fragile skin that blisters or tears easily
- Open wounds or areas of skin loss
- Scarring or changes in skin texture
- Nail changes or nail loss
Experiences affecting other parts of the body:
- Blisters inside the mouth or throat
- Difficulties eating or swallowing
- Eye irritation or sensitivity
- Digestive symptoms or nutritional challenges
Other experiences:
- Pain or discomfort
- Itching
- Fatigue
- Additional time needed for wound care, dressing changes, and daily routines
Not everyone will experience all of these, and they may present differently for each person.
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Important note
This information is intended for awareness and education only. It is not a diagnostic tool and should not be used to identify or diagnose any condition. If you have concerns, please seek advice from a qualified healthcare professional.
Sources
DEBRA International: https://www.debra-international.org/
DEBRA UK: https://www.debra.org.uk/
DEBRA USA: https://www.debra.org/
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): https://www.niams.nih.gov/health-topics/epidermolysis-bullosa
EB Research Network: https://www.eb-researchnetwork.org/research/what-is-eb/
The content on this page has been reviewed by Debra, June 2026. For further information, please visit [https://www.debra.org.uk]