Living with Epidermolysis bullosa simplex 1C, localized
A milder form of EB simplex with blisters mainly on the palms and soles, worse in warm weather.
Understanding Epidermolysis bullosa simplex 1C, localized
It was formerly called Weber-Cockayne. Blisters get worse in warm weather. It usually begins in childhood. People may also have pain, itching, and thickened skin where there is friction.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blisters on palms and soles
- Heat intolerance
- Itching
- Foot pain
- Pain in the arms and hands
- Pins and needles feeling (paresthesia)
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.
- 3Consider genetic testing
Changes in KRT14 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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
Changes in the KRT14 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: debs-wc; dominant epidermolysis bullosa simplex, weber-cockayne type; ebs-loc; ebs, acral form; epidermolysis bullosa of hands and feet; epidermolysis bullosa simplex of palms and soles
Patient organizations
- DEBRA of AmericaEpidermolysis bullosa simplex 1C, localized · United States
- Epidermolysis Bullosa Medical Research FoundationEpidermolysis bullosa simplex 1C, localized · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Epidermolysis bullosa simplex 1C, localized.
Explore research for Epidermolysis bullosa simplex 1C, localized
Explore actively recruiting Epidermolysis bullosa simplex 1C, localized studies with HealthSpark.
Find actively recruiting studies for Epidermolysis bullosa simplex 1C, localized 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 simplex 1C, localized 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 simplex 1C, localized
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 simplex 1C, localized 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.