Living with Localized junctional epidermolysis bullosa, non-Herlitz type
An inherited skin condition with blisters mostly on the hands, feet, lower legs, and face, starting in newborns.
Understanding Localized junctional epidermolysis bullosa, non-Herlitz type
Blistering begins in the newborn period and is mainly on the hands, feet, lower legs, and face. Nails are poorly formed or absent. Other findings may include weak tooth enamel and more cavities.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blisters on the skin
- Fragile skin
- Poorly formed nails (nail dystrophy)
- Pits in the tooth enamel
- Patchy hair loss
- Sparse underarm hair
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, gum, teeth and mouth 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); Gum, teeth and mouth specialists (odontologists); 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
A child inherits a changed copy of the gene from each parent (autosomal recessive). GARD does not name a gene.
Also known as: jeb-nh loc; junctional epidermolysis bullosa, non-herlitz localized type; localized jeb; localized junctional epidermolysis bullosa; localized junctional epidermolysis bullosa non-herlitz type; localized non-herlitz junctional epidermolysis bullosa
Patient organizations
- DEBRA of AmericaLocalized junctional epidermolysis bullosa, non-Herlitz type · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Localized junctional epidermolysis bullosa, non-Herlitz type.
Explore research for Localized junctional epidermolysis bullosa, non-Herlitz type
Explore actively recruiting Localized junctional epidermolysis bullosa, non-Herlitz type studies with HealthSpark.
Find actively recruiting studies for Localized junctional epidermolysis bullosa, non-Herlitz type 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 Localized junctional epidermolysis bullosa, non-Herlitz type 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 Localized junctional epidermolysis bullosa, non-Herlitz type
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 Localized junctional epidermolysis bullosa, non-Herlitz type 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.