Living with Epidermolysis bullosa
A group of genetic skin diseases in which the skin blisters very easily from minor rubbing or injury.
Understanding Epidermolysis bullosa
Blisters form after minor injuries or friction, like rubbing or scratching. There are four main types: EB simplex, dystrophic EB, junctional EB, and Kindler syndrome. People can be mildly or severely affected. Some may need to adjust activities, and others are disabled by the disease.
Signs & symptoms
GARD doesn't list specific symptoms for this group of conditions. Its summary describes:
- Skin that blisters easily
- Blisters from rubbing or scratching
- Areas of skin that wear away (erosions)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
DEBRA of America may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: DEBRA of America
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with DEBRA of America and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in at least 18 genes that help build and repair skin can cause EB. It may be autosomal dominant or autosomal recessive, depending on the type.
Also known as: acantholysis bullosa; acanthosis bullosa; bullous recurrent eruption; dermatitis bullosa hereditaria; eb - epidermolysis bullosa; fox disease
Patient organizations
- DEBRA of AmericaEpidermolysis bullosa · United States
- Ben's FriendsEpidermolysis bullosa · United States
- Epidermolysis Bullosa Medical Research FoundationEpidermolysis bullosa · United States
You are more than your diagnosis
Perspectives from people navigating life with Epidermolysis bullosa.
Explore research for Epidermolysis bullosa
Explore actively recruiting Epidermolysis bullosa studies with HealthSpark.
Find actively recruiting studies for Epidermolysis bullosa with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Epidermolysis bullosa studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Epidermolysis bullosa
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Epidermolysis bullosa experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.