Living with Localized dystrophic epidermolysis bullosa
A mild-to-localized form of inherited skin fragility with blisters mainly on the hands and feet or shins, and nail changes.
Understanding Localized dystrophic epidermolysis bullosa
Blisters are mainly on the hands and feet (acral form) or on the shins (pretibial form). Nail changes or loss are common, and sometimes the nails are the only sign (nail-only form). It begins in newborns and infants.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes these features:
- Blisters on the hands and feet
- Blisters on the shins
- Nail changes or loss
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
Specialists who may be involved include genetic specialists and skin, hair, and nail specialists.
- 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
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- 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
It can be inherited in an autosomal dominant or autosomal recessive way. GARD does not name a gene.
Also known as: localised deb; localized deb
Patient organizations
- DEBRA of AmericaLocalized dystrophic epidermolysis bullosa · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Localized dystrophic epidermolysis bullosa.
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